Jaxson never does anything the easy way. It's go big or go home with this kid, every time. Most recently, we had to rush Jaxson to the ER. On August 17, Jaxson started to get fussy. Jayson as at work, but thankfully our friend Kelly was in town from Charlotte. Jaxson spiked a fever of 101.7 around 10:30pm. I brought him downstairs and gave him Tylenol, ear drops and gas drops, unsure of the cause. He decided to throw up his entire 3oz snack on me, two hours after he ate it. His fever broke and we cuddled up on the living room floor. He woke up again around 5am (mind you I had to stay awake to feed him at 12am) and had another high fever. I gave him more medicine and got him back to sleep. When he woke up the next morning, he was a different baby. Still not 100%, but definitely happier. We got him to take his food, working from a few ounces up to a normal feed, without getting sick. He slept most of the day, and started to heat up again, but we caught the temperature at 100 and he was fine. Thankfully, we got to go home the next day. And thanks to my parents, sister and niece, Jeffrey did not have to deal with his brother and one of his parents being out of the house for the night!
The following day, I had planned on going back to work. I was only going to go for a few hours because Jayson had to work (we'll get to that), and then someone was coming in to cover me. That is not how the day went at all. We knew as soon as Jeffrey got out of bed that he wasn't doing well. Fever of 101. Okay, fine, that's not horrible. We gave him some Tylenol and he perked up a little, but not all the way. Still, his fever dropped so I planned on going in. Three hours into his Tylenol, Jeffrey's fever skyrocketed to 103.7. I immediately called Jayson to come back (no idea where he was now) so we could take Jeffrey to the ER. My biggest concern was strep with the fever spiking under meds. Luckily it wasn't that, but they determined that he had gotten enterovirus from Jaxson. Awesome. So, home I stayed. Jeffrey ended up being pretty sick that day, but did much better the following day and is now back to his normal rotten self.
When I had to call off of work three days in a row, I spoke with my manager and we agreed. It was not fair to the bank for me to continue to call off work for emergencies, especially when they were really relying on me being there. So I ended up not going back at all. Jayson found a job pretty quickly and we've transitioned back into traditional roles. It's an adjustment for everyone, let me tell you. This is a whole new way of life for me. I've had a job since I was 15, so not working is weird. Jeffrey is all out of sorts. Between daddy being gone all the time now and starting school, it's no wonder that he had an upset stomach today. I kept him home and shortly after I called the school to let them know, he threw up on the blanket I had put down in case he needed to get sick. Now he's sleeping in my recliner. I just hope he feels better when he wakes up! Jayson is adjusting to working full-time again. After not working for over a year, he has done a good job of integrating himself back into the work force. I think Jaxson has had the easiest time with this change. Mommy is home all the time, he loves his schedule and basically sticks to it without a fuss, and he hasn't thrown up since he came home from the hospital. If you are new to this blog, Jaxson used to throw up after every feed. Every. Single. One. And we're not talking a little spit up, we're talking vomiting all over himself, the floor, and whoever happens to be holding him at such an inconvenient time. Thank goodness it appears that we're past that!
Adjusting to life as a stay at home mom has been both frustrating and rewarding. It's frustrating in that I am dealing with two young children every day who constantly battle my every decision. Jeffrey is testing his limits with mom, and he's quickly learning that mom has more will power than he does. There have been a lot of fits, many time outs, and even a few swats on the bottom. On the flip side, there has been relaxation, wrestling on the floor, watching movies and lots of laughter! Each day I learn something new about both of my boys, and each day they amaze me with what they are capable of doing on their own. They make me laugh with their quirky personalities and make me cry when I can't seem to get it right. And I love every second. I can personally keep an eye on Jaxson and make sure I get to all of his appointments without hassle. I can make sure that Jeffrey gets on and off the bus every day, and I can have a fun snack or surprise waiting for him when he gets home. I get to teach them, to play with them, to love on them and be loved by them every second of every day. I wouldn't change it for the world!
The next two weeks are going to be extremely busy and difficult to manage. Jaxson has five appointments next week alone, only one of which is at our house. We meet the new Neurosurgeon on the 3rd, Help Me Grow (home) on the 4th, PT and Speech on the 5th, and the dietician on the 6th. The following week is just as bad, on the 9th is audiology, the 10th he's supposed to go to school, the 12th is PT and the 13th is his EEG. Then we get a five day break until his surgery on the 18th, and we haven't found out how long he's going to be there yet. After surgery, we're clear of appointments for awhile. I say awhile, what I mean is two weeks! But hopefully we'll start getting some answers soon.
So in this thing called life, we are doing well overall. Everyone seems more relaxed and ready to do what needs done. It's good for Jayson to have the distraction of work every day, and it's good for me to be with the boys every day. I think we made the right decision, so hopefully we don't get bit in the butt later!
Also, you may have noticed the links under the "Pages" section growing. Because Jaxson does not have a diagnosis, I have decided to put up links to the different things he has going on in his body. At least the ones I could find that would be helpful to anyone not familiar with the situation. I also have added some Facebook pages for a couple of people, as well as links to a few foundations that are close to me. Each link under the Pages section will take you directly to that particular website. This will be updated as we gain more information and as I have more time to fool around with blogspot and see what capabilities it has.
Now that it's four days after I started this silly thing, I'm finally done. Jaxson did very well at PT this morning and we're headed in for a follow up vision check. Crossies that I'm wrong about his strabismus!
~S
"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference."
Thursday, August 29, 2013
Thursday, August 15, 2013
Surgeries: Round 2
First, I want to apologize to everyone who relies on this blog for updates. I know it's been two months since my last post, and there's a lot of information to put out here today. I will try to update more frequently as Jaxson has appointments!
On July 9, Jaxson had an MRI on his spine and skull and a 3D image of his skull. The next day, which was a Wednesday, I was pretty sick and decided to stay home. Best decision I could have made. I received a call that afternoon from the Nuerosurgery departments asking if we could come in the following morning (Thursday) at 5:45am for a brain MRI. I was so shocked I could hardly get out my questions. I asked what they were looking for and was told that the radiologist thought there might be fluid on his brain. If they found that to be correct, they already had a spot for Jaxson in the OR for Friday for a shunt. So we went to the MRI the next day and Dr. Jackson came to speak with us after everything was completed. Jaxson wasn't even in the room from recovery yet. Dr. Jackson (whom we love and were super sad to see leave Children's for Johns Hopkins) informed us that Jaxson did indeed have fluid on his brain. However, they did not think there was any pressure being placed on his brain and rather than place the shunt, they had us take Jaxson to the eye doctor so they could check his optic nerves for pressure. Thankfully they didn't see enough to warrant a shunt. But Dr. Jackson said there were more things we needed to know. Jaxson's lambdoid sutures (back of the skull) were fused. His sagittal suture was fusing. He would need at least one additional surgery on his head, possibly more. He was given a partial diagnosis of syndromic synostosis and we were to meet with the plastic surgeon the following week. He also needs more spin surgery. They will do another scan in a few months to determine the next course of action for that, but it looks like he may have an issue all the way up his spine. There is also the potential that he has a chiri malformation, although that won't be certain until the next surgery is done and they can see if the surgery gives his brain more room to expand.
Jaxson was supposed to have his cleft palate repaired on July 29, but it has now been postponed. He will have distraction surgery (http://www.medscape.com/viewarticle/405635_2) on September 18, my dad's birthday. I'm not sure how long he'll be in the hospital for that one, but probably a week. This procedure is actually 2 surgeries because they have to go in and remove the device, and when they do that, they will likely fix the cleft. In a nutshell, rather than unfusing the bones and expanding them (what they did with his coronal sutures last year), they will make a horizontal cut across the back of Jaxsons skull. They will put in a device that will help expand his skull at a slower pace. This is the best option for him because the back of his head is flat and there isn't much skin to advance the bones the same way they did before. The downside is that he'll have knobs on the outside of his head. We'll have to turn them every day in order to create more space and allow the skin on his skull to recover and expand at a much slower pace. The hope is that by doing this, they won't have to operate on the sagittal sutures and that the space created will give his brain enough room to grow, relieve the fluid in his brain, and make the apparent chiri malformation go away. Only time will tell what the outcome will be. The "wait and see" game is the story of our lives right now.
So that's two surgeries we weren't prepared for, although it's nice that they can combine the second surgery with fixing his cleft. Then we'll have to address the spine, and who knows what that will be like. He'll need at least one surgery on that, possibly more if they don't get the problem completely solved. What has me worried about his spine is that the initial tethering was caused by scar tissue. There's only so much you can do to remove scar tissue without impacting the areas around it, so it's possible that they will not be able to fix it completely.
Round 2 has begun. Each surgery has to be at least 3 months apart from the previous surgery, so at this point we're looking at another year's worth of surgeries. On top of his regular appointments, which now include a visit to the eye doctor every few months and speech therapy. Oh, and I forgot that he'll have to see Physical Medicine and Neurology now too. He may need braces on his feet to correct the positioning for walking, an he's still doing that shaking thing, although not as often.
This sudden turn has taken a huge toll on our family. Jayson and my anxiety levels are through the roof, stress is high, and because my pay was screwed up for two months, money is hard to come by. Jayson and I are working on switching out because he can handle working full-time and I can't. I need to be home with my baby. It won't be an easy transition for anyone, but it's something that has to be done.
Amid all of this, I have had several people ask why I don't just go back to full-time at the bank, stating that sometimes sacrifices have to be made. If one more person talks to me about sacrifices, I might go through the roof. This is something I have to get off my chest, and is not directed at any one person. You want to talk sacrifice? Sacrifice is returning to work from maternity leave while your son is having a feeding tube placed. Sacrifice is not being able to go on a date with your husband for over a year because no one can watch your child. Sacrifice is sleeping an average of four hours a night in 30-45 minute intervals for a year and still managing to go to work every day and help take care of the kids when you get home. Sacrifice is giving up part of your manhood to stay home with the kids because your wife makes more money than you do. Sacrifice is moving to the inner-city because it's cheaper, even though it's not safe. Sacrifice is risking your job because you're so concerned about your child's well-being. No one, no one can possibly understand all of the sacrifices Jayson and I have made over the last 18 months (including while I was pregnant) in order to make sure our children have a decent life. Sacrifice is skipping meals or eating very small portions to make sure that your child can eat when he's hungry. Sacrifice is knowing that when all is said and done, your credit will be in the toilet because of medical bills that can't be paid, and shrugging it off because there are worse things in life than not owning your home or being able to get a credit card. Sacrifice is leaving your child in the hands of someone else, praying that he'll come back to you the way he's supposed to. I have a couple of friends who might have an inkling because of their own children, but until you have a child with medical disabilities that has to have multiple surgeries in a year's time, do not come at me with sacrifices. We have done everything in our power to maintain a "normal" family life for our children, and it has cost us. Not just monetarily, but emotionally and mentally. We are good parents who have fallen on hard times. But we will NOT let that get in the way of raising our children properly.
On a lighter and happier note, both Jaxson and Jeffrey will be going to the Head Start school this fall. They will be picked up and dropped off every afternoon. Jaxson will get therapy while he is there, on top of the therapies we do at Children's. Jeffrey will get the social interaction and education he so desperately needs and wants. If either of us are home with the kids at that time, that person will get at least a 4 hour break every day to get things done around the house and not have kids in the way as a distraction. And it will only cost us $100 a month. Can't beat that!
Our lives are in a constant state of chaos. It's always a waiting game with Jaxson. Waiting to see what this next surgery will bring, waiting to see what doctor is going to throw something in our lap next, waiting on his next round of appointments. And there's always financial stress. Because my pay was messed up due to my leave, we will not get SSI for Jaxson this month or next. We count on that money to pay our rent, so now we are saving every penny we can find while still putting food on the table for the kids. We can handle it. We will get through it. We always do. And while J and I have argued more recently (we almost never fight and it's always been that way), our relationship is as strong as ever.
The Burks' and the Sanderson's are fighters, and Jaxson exhibits every ounce of defiance he can. He is not going down without a fight, and he's happy to accept the challenge. His smile and laughter are what get me through most days, along with the random, "I love you Mommy" comments and requests for hugs and kisses from Jeffrey. I live for those moments, which are often in this house. Jayson and I must be doing something right to have two happy kids who seem to not have a care in the world. In that aspect, we have done a great job not showing the kids how hard this is for us. And we really can't ask for more than that, because that is what life is all about. No matter what the situation, if your kids are happy with a roof over their heads and food on the table, everything else is minute.
I will end this long blog with a line from a Nickelback song. I'm not a huge fan, but I like this line: "My best friend gave me the best advice/He said, 'Each day's a privilege and not a given right.'" So true. So make the best of it today. Give someone a hand, hold the door open, smile at people you pass on the street. You'll be surprised with how good you feel at the end of the day, and the impact you have on the people you encounter may never be known. You could be the person to turn someone's day around, or even their life.
-S
-"Life is not what it's supposed to be, it is what it is. The way you cope with it is what makes the difference."
On July 9, Jaxson had an MRI on his spine and skull and a 3D image of his skull. The next day, which was a Wednesday, I was pretty sick and decided to stay home. Best decision I could have made. I received a call that afternoon from the Nuerosurgery departments asking if we could come in the following morning (Thursday) at 5:45am for a brain MRI. I was so shocked I could hardly get out my questions. I asked what they were looking for and was told that the radiologist thought there might be fluid on his brain. If they found that to be correct, they already had a spot for Jaxson in the OR for Friday for a shunt. So we went to the MRI the next day and Dr. Jackson came to speak with us after everything was completed. Jaxson wasn't even in the room from recovery yet. Dr. Jackson (whom we love and were super sad to see leave Children's for Johns Hopkins) informed us that Jaxson did indeed have fluid on his brain. However, they did not think there was any pressure being placed on his brain and rather than place the shunt, they had us take Jaxson to the eye doctor so they could check his optic nerves for pressure. Thankfully they didn't see enough to warrant a shunt. But Dr. Jackson said there were more things we needed to know. Jaxson's lambdoid sutures (back of the skull) were fused. His sagittal suture was fusing. He would need at least one additional surgery on his head, possibly more. He was given a partial diagnosis of syndromic synostosis and we were to meet with the plastic surgeon the following week. He also needs more spin surgery. They will do another scan in a few months to determine the next course of action for that, but it looks like he may have an issue all the way up his spine. There is also the potential that he has a chiri malformation, although that won't be certain until the next surgery is done and they can see if the surgery gives his brain more room to expand.
Jaxson was supposed to have his cleft palate repaired on July 29, but it has now been postponed. He will have distraction surgery (http://www.medscape.com/viewarticle/405635_2) on September 18, my dad's birthday. I'm not sure how long he'll be in the hospital for that one, but probably a week. This procedure is actually 2 surgeries because they have to go in and remove the device, and when they do that, they will likely fix the cleft. In a nutshell, rather than unfusing the bones and expanding them (what they did with his coronal sutures last year), they will make a horizontal cut across the back of Jaxsons skull. They will put in a device that will help expand his skull at a slower pace. This is the best option for him because the back of his head is flat and there isn't much skin to advance the bones the same way they did before. The downside is that he'll have knobs on the outside of his head. We'll have to turn them every day in order to create more space and allow the skin on his skull to recover and expand at a much slower pace. The hope is that by doing this, they won't have to operate on the sagittal sutures and that the space created will give his brain enough room to grow, relieve the fluid in his brain, and make the apparent chiri malformation go away. Only time will tell what the outcome will be. The "wait and see" game is the story of our lives right now.
So that's two surgeries we weren't prepared for, although it's nice that they can combine the second surgery with fixing his cleft. Then we'll have to address the spine, and who knows what that will be like. He'll need at least one surgery on that, possibly more if they don't get the problem completely solved. What has me worried about his spine is that the initial tethering was caused by scar tissue. There's only so much you can do to remove scar tissue without impacting the areas around it, so it's possible that they will not be able to fix it completely.
Round 2 has begun. Each surgery has to be at least 3 months apart from the previous surgery, so at this point we're looking at another year's worth of surgeries. On top of his regular appointments, which now include a visit to the eye doctor every few months and speech therapy. Oh, and I forgot that he'll have to see Physical Medicine and Neurology now too. He may need braces on his feet to correct the positioning for walking, an he's still doing that shaking thing, although not as often.
This sudden turn has taken a huge toll on our family. Jayson and my anxiety levels are through the roof, stress is high, and because my pay was screwed up for two months, money is hard to come by. Jayson and I are working on switching out because he can handle working full-time and I can't. I need to be home with my baby. It won't be an easy transition for anyone, but it's something that has to be done.
Amid all of this, I have had several people ask why I don't just go back to full-time at the bank, stating that sometimes sacrifices have to be made. If one more person talks to me about sacrifices, I might go through the roof. This is something I have to get off my chest, and is not directed at any one person. You want to talk sacrifice? Sacrifice is returning to work from maternity leave while your son is having a feeding tube placed. Sacrifice is not being able to go on a date with your husband for over a year because no one can watch your child. Sacrifice is sleeping an average of four hours a night in 30-45 minute intervals for a year and still managing to go to work every day and help take care of the kids when you get home. Sacrifice is giving up part of your manhood to stay home with the kids because your wife makes more money than you do. Sacrifice is moving to the inner-city because it's cheaper, even though it's not safe. Sacrifice is risking your job because you're so concerned about your child's well-being. No one, no one can possibly understand all of the sacrifices Jayson and I have made over the last 18 months (including while I was pregnant) in order to make sure our children have a decent life. Sacrifice is skipping meals or eating very small portions to make sure that your child can eat when he's hungry. Sacrifice is knowing that when all is said and done, your credit will be in the toilet because of medical bills that can't be paid, and shrugging it off because there are worse things in life than not owning your home or being able to get a credit card. Sacrifice is leaving your child in the hands of someone else, praying that he'll come back to you the way he's supposed to. I have a couple of friends who might have an inkling because of their own children, but until you have a child with medical disabilities that has to have multiple surgeries in a year's time, do not come at me with sacrifices. We have done everything in our power to maintain a "normal" family life for our children, and it has cost us. Not just monetarily, but emotionally and mentally. We are good parents who have fallen on hard times. But we will NOT let that get in the way of raising our children properly.
On a lighter and happier note, both Jaxson and Jeffrey will be going to the Head Start school this fall. They will be picked up and dropped off every afternoon. Jaxson will get therapy while he is there, on top of the therapies we do at Children's. Jeffrey will get the social interaction and education he so desperately needs and wants. If either of us are home with the kids at that time, that person will get at least a 4 hour break every day to get things done around the house and not have kids in the way as a distraction. And it will only cost us $100 a month. Can't beat that!
Our lives are in a constant state of chaos. It's always a waiting game with Jaxson. Waiting to see what this next surgery will bring, waiting to see what doctor is going to throw something in our lap next, waiting on his next round of appointments. And there's always financial stress. Because my pay was messed up due to my leave, we will not get SSI for Jaxson this month or next. We count on that money to pay our rent, so now we are saving every penny we can find while still putting food on the table for the kids. We can handle it. We will get through it. We always do. And while J and I have argued more recently (we almost never fight and it's always been that way), our relationship is as strong as ever.
The Burks' and the Sanderson's are fighters, and Jaxson exhibits every ounce of defiance he can. He is not going down without a fight, and he's happy to accept the challenge. His smile and laughter are what get me through most days, along with the random, "I love you Mommy" comments and requests for hugs and kisses from Jeffrey. I live for those moments, which are often in this house. Jayson and I must be doing something right to have two happy kids who seem to not have a care in the world. In that aspect, we have done a great job not showing the kids how hard this is for us. And we really can't ask for more than that, because that is what life is all about. No matter what the situation, if your kids are happy with a roof over their heads and food on the table, everything else is minute.
I will end this long blog with a line from a Nickelback song. I'm not a huge fan, but I like this line: "My best friend gave me the best advice/He said, 'Each day's a privilege and not a given right.'" So true. So make the best of it today. Give someone a hand, hold the door open, smile at people you pass on the street. You'll be surprised with how good you feel at the end of the day, and the impact you have on the people you encounter may never be known. You could be the person to turn someone's day around, or even their life.
-S
-"Life is not what it's supposed to be, it is what it is. The way you cope with it is what makes the difference."
Thursday, June 13, 2013
Sometimes, Life Hands You Lemons...
Right now, it feels like life has handed us a truckload of lemons and said, "Hey, let's see what you can do with this." Ever since Jaxson was born it's been appointment after appointment, surgery after surgery, test after test, and therapy after therapy. The poor kid has been through so much, and still has so much left to go through. It's such a helpless feeling, as a parent, to not be able to protect your child from scary things. I cry every time we leave him in the Surgery Center because I know he's confused and upset that I'm not with him. Of course, I also know that doesn't last long because they knock him out, but that doesn't make it easier. No parent ever wants to see their child scared and confused. Especially when nothing can be done to change it.
First, I want to go over the speech evaluation. There are two types of speech, one is Understanding and I forget what the other one is called, but it has to do with your ability to say words. Jaxson tested at the 8-9 month level for understanding (same place he is with his other development), and he tested at the 6-7 month level for the other. The therapist said that he tested lower than she expected on that one, but it's mostly because of his cleft. He will only have the ability to say certain things while the cleft is open, so getting the harder consonants out of his mouth just won't happen. She, of course, fell in love with his big blue eyes, and said that since his cleft surgery is scheduled for next month, we should wait until after that to start speech. They would treat him a different way if we started now, so it doesn't make sense to do one thing for two months only to switch it up on him. I agreed, so I will get in touch with her when he's cleared to start speech after his surgery. Or I'll call and let her know that the surgery has been moved because they need to do another one on his head.
We met Jaxson's new OT with Help Me Grow today. She's awesome, and I think she's going to do great with Jax. It was funny, she made a comment before she left to her counterpart about how she was right, that we had everything under control and we did the things we're supposed to do. I got a kick out of that. Of course we are! We want nothing but the best for our baby, and I can't understand a parent not wanting that. I'm sure some parents have a hard time making time to do exercises and things with their kids, but man, I would sure make time to give my child every opportunity to learn and grow. Anyway, I shared a video (posted below) with them, and they think it's a good idea that we're going to see Neurology. Meaning, they saw something that didn't look quite right and they don't think it's a sensory issue. So it could be seizure related, or it could be some other neurological issue. Either way, October can't come fast enough.
This was the first time Jaxson did this while sitting in his bouncer. Normally, he's on the floor playing when it happens, but not this time. Which means the situation is changing, which means it can keep changing. The thing with this shaking that concerns me is that it opens up a plethora of new diagnoses. Disorders and syndromes I have researched for the last year have to be re-researched to include the potential for seizures, or seizure-like symptoms. It's just so frustrating that we have to wait until October to get into the Neurology department. And now I'm even more anxious to see what his CT scans say next month. Is it that his brain is out of room because he has a flat head, or his is brain not growing fast enough? Will they be able to see any abnormalities in his brain with the CT, or will Neurology want a PET scan? Is he going to need a fifth surgery? Will they find something that indicates there could be future surgeries?
I can play this game all day long.
But I won't.
What I will do, though, is hug my baby until he squirms, kiss his face until he pushes me away, play with him and do his exercises so he can continue to develop and grow, and, most of all, I will love him with every ounce of my being. Mom's always tell you that you love your kids equally, and it's taken some time for me to allow myself to get to this point, but I am overwhelmed with how true that is. I didn't think there would be enough room in my heart to love another child as much as I love Jeffrey, but baby Jax has wiggle-wormed his way into a snug cubby in my heart and refuses to move. I don't think I allowed myself to bond with him initially because I was so scared that he wasn't going to make it. But the more and more he grows and overcomes, the more I believe that no matter what they eventually diagnose him with, he will be just fine. He's surrounded by people who love and adore him. He has parents who will fight to the death for him. He has brothers who will do anything do protect him. And he has the support of hundreds of people who are pulling for him to keep doing what he's doing.
Sometimes life hands you lemons. In our case, a truckload. You can either be a sour-puss and piddle your life away, or you can use those lemons to make lemonade and hope that you touch someone who needs it. I have more good days than bad days anymore, but I truly hope that I am helping someone with the words I put on the screen. The last year (I can't believe it will be a year soon!) has been a true up and down roller coaster. But you know what? I still have a job, I still have a roof over my head (barely), I have two beautiful children who love each other and their parents, and most of all, my marriage is not only intact, but stronger than ever. We may not deal with things in the exact way we should, but everything gets dealt with at some point.
I am truly blessed to have such an amazing family, to have supportive friends, and an employer that's willing to work with me. I'm so thankful every day that I have people I can lean on, people that will tell me I need to take better care of myself until I actually do it. People that will just listen and not try to compare a situation in their lives to mine. People that will take five minutes just to say, "Hey, I'm thinking about you," and not get angry when I don't respond right away. In spite of everything, or maybe it's because of everything, I have never been happier in my life than I am right now.
"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference."
First, I want to go over the speech evaluation. There are two types of speech, one is Understanding and I forget what the other one is called, but it has to do with your ability to say words. Jaxson tested at the 8-9 month level for understanding (same place he is with his other development), and he tested at the 6-7 month level for the other. The therapist said that he tested lower than she expected on that one, but it's mostly because of his cleft. He will only have the ability to say certain things while the cleft is open, so getting the harder consonants out of his mouth just won't happen. She, of course, fell in love with his big blue eyes, and said that since his cleft surgery is scheduled for next month, we should wait until after that to start speech. They would treat him a different way if we started now, so it doesn't make sense to do one thing for two months only to switch it up on him. I agreed, so I will get in touch with her when he's cleared to start speech after his surgery. Or I'll call and let her know that the surgery has been moved because they need to do another one on his head.
We met Jaxson's new OT with Help Me Grow today. She's awesome, and I think she's going to do great with Jax. It was funny, she made a comment before she left to her counterpart about how she was right, that we had everything under control and we did the things we're supposed to do. I got a kick out of that. Of course we are! We want nothing but the best for our baby, and I can't understand a parent not wanting that. I'm sure some parents have a hard time making time to do exercises and things with their kids, but man, I would sure make time to give my child every opportunity to learn and grow. Anyway, I shared a video (posted below) with them, and they think it's a good idea that we're going to see Neurology. Meaning, they saw something that didn't look quite right and they don't think it's a sensory issue. So it could be seizure related, or it could be some other neurological issue. Either way, October can't come fast enough.
This was the first time Jaxson did this while sitting in his bouncer. Normally, he's on the floor playing when it happens, but not this time. Which means the situation is changing, which means it can keep changing. The thing with this shaking that concerns me is that it opens up a plethora of new diagnoses. Disorders and syndromes I have researched for the last year have to be re-researched to include the potential for seizures, or seizure-like symptoms. It's just so frustrating that we have to wait until October to get into the Neurology department. And now I'm even more anxious to see what his CT scans say next month. Is it that his brain is out of room because he has a flat head, or his is brain not growing fast enough? Will they be able to see any abnormalities in his brain with the CT, or will Neurology want a PET scan? Is he going to need a fifth surgery? Will they find something that indicates there could be future surgeries?
I can play this game all day long.
But I won't.
What I will do, though, is hug my baby until he squirms, kiss his face until he pushes me away, play with him and do his exercises so he can continue to develop and grow, and, most of all, I will love him with every ounce of my being. Mom's always tell you that you love your kids equally, and it's taken some time for me to allow myself to get to this point, but I am overwhelmed with how true that is. I didn't think there would be enough room in my heart to love another child as much as I love Jeffrey, but baby Jax has wiggle-wormed his way into a snug cubby in my heart and refuses to move. I don't think I allowed myself to bond with him initially because I was so scared that he wasn't going to make it. But the more and more he grows and overcomes, the more I believe that no matter what they eventually diagnose him with, he will be just fine. He's surrounded by people who love and adore him. He has parents who will fight to the death for him. He has brothers who will do anything do protect him. And he has the support of hundreds of people who are pulling for him to keep doing what he's doing.
Sometimes life hands you lemons. In our case, a truckload. You can either be a sour-puss and piddle your life away, or you can use those lemons to make lemonade and hope that you touch someone who needs it. I have more good days than bad days anymore, but I truly hope that I am helping someone with the words I put on the screen. The last year (I can't believe it will be a year soon!) has been a true up and down roller coaster. But you know what? I still have a job, I still have a roof over my head (barely), I have two beautiful children who love each other and their parents, and most of all, my marriage is not only intact, but stronger than ever. We may not deal with things in the exact way we should, but everything gets dealt with at some point.
I am truly blessed to have such an amazing family, to have supportive friends, and an employer that's willing to work with me. I'm so thankful every day that I have people I can lean on, people that will tell me I need to take better care of myself until I actually do it. People that will just listen and not try to compare a situation in their lives to mine. People that will take five minutes just to say, "Hey, I'm thinking about you," and not get angry when I don't respond right away. In spite of everything, or maybe it's because of everything, I have never been happier in my life than I am right now.
"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference."
Friday, May 24, 2013
Two Steps Forward, One Step Back
Yesterday was a full day in the Burks household. Jaxson had a Neonatology appointment in the morning, followed by a neurosurgery appointment in the afternoon. Our friend Kelly came to visit from Charlotte and Jayson did a tattoo last night. That said, I obviously wasn't able to post about his appointments last night, and I'm not even sure where to start now.
I guess I'll start with Neonatology. Jaxson had a developmental assessment, which went really well. The woman that did the assessment said that Jaxson is at an 8 or 9 month level developmentally, which is an improvement over last time. That puts him about two months behind, and last time it was three, so he's catching up a little! Which is fabulous news, but we have an off-set to that news. We were referred to Neurology. Jaxson has been sitting on his own and crawling for about a month now. About two weeks ago, Jaxson started doing this thing when he crawls. He stops for whatever reason and leans on one side (doesn't matter which one). He'll sit there just fine for a little bit and then he'll start shaking/rocking back and forth. He does the same thing sometimes when he's on all fours. He'll stop and nod his head up and down repeatedly. He doesn't lose consciousness or anything, but it's definitely not normal. He also has a habit of kicking the hard plastic piece of his bouncer or the hardwood floors when he's laying on his back. He kicks hard. We think that it should definitely hurt him and it does not. Then, when we were at audiology on Wednesday, he was sitting by a door and purposely jerking his head back to hit the door with the back of his head. I moved him and he stopped, but that's still not okay. And he likes to bang the back of his head off of our chests if he's sitting on our laps. So we're not really sure what's going on there, but hopefully neurology will have some answers. Overall, Jaxson's Neonatology appointment went well. He's following his own little growth curve a little under the 3rd percentile, but as long as he's not losing weight they said to keep doing what we are doing. Which is what I was going to do anyway, I don't hold a lot of stock in those charts.
After Neonatology, Jaxson and I came home for a little bit to have lunch before we left again for Neurosurgery. The appointment was a follow-up to his spine surgery. We got our referrals back to OT and PT, so we'll be spending a lot more time at the hospital again, but that's okay. Dr. Jackson said that his spine healed up great and that Jax looks good. Then there's more bad news. Jaxson's head isn't growing as fast as it should be. His head measures 42cm and he should be at 43.8cm. I don't really know what that means, except that they're concerned and they want another look at it. They were going to do a scan on his spine again anyway, just to make sure nothing tethered back up and the spinal fluid they pulled hasn't come back. So now when they do that scan, they are doing another CT of his skull. The scans will be done at the end of June so they can look at it before the cleft surgery in July. If his skull needs redone, they'll probably do that before the cleft. They are also going to take a second look at his ventricles. They were a little prominent on the last scan, nothing major I guess, and it could have been due to his head being constricted. But with everything else, they will take a second look at those too. And he wants another test to check Jaxson's kidneys again.
In between the two appointments, I received a call from Genetics. Dr. Hickey wants to follow up with Jaxson too. We didn't get an appointment scheduled because he is booked through July and the August calendar isn't open yet. So I have to call back in a couple of weeks to schedule the appointment. Since there's new information for Jaxson now, and there will be even more by August, I'm hoping that he'll have something to tell us. I am so tired of this waiting game. So many disorders and conditions affect development, that the doctors have mostly been just tracking everything and fixing the things that are fixable. Which is fine, except that we have no answers. I have done so much research and have not found one thing that fits Jaxson. I can find things that cover some of his issues, but not all of them combined. Hell, maybe he'll have something named after him. I don't know, it's just so frustrating. The doctors keep telling us that we're doing all of the right things to make sure he's treated properly, but until I know for sure what his diagnosis is going to be, I won't be able to trust that.
When I was on my way home, I called Jayson to tell him what was going on. His response was a heavy sigh and he asked, "It kinda feels like we're starting round two, doesn't it?" I said, "Yeah, it sure does." It's like we get amazing news about his development and how he's progressing by leaps and bounds, but then we take a step back with his body. I'm trying so hard to stay positive, but it's not easy. I sit here and think about everything Jaxson has gone through and I wonder why he can't just be done? Why do things keep popping up that need addressed? Why can't he be like a "normal" baby and not go to the hospital at least twice a week? I just want to grab him up and cuddle him forever and tell him that everything is going to be okay. I want to tell him that he's perfect the way he is and that he is special. I want to protect him from all of the craziness in the world, not take him to a place that is always stirring with craziness. I want him to always be as happy as he is now so he can keep lighting up the world with that smile. I don't want him to know pain or loneliness, although my rational brain tells me he will experience both in life. I just want him to be a regular boy and experience regular things and not be stuck in a waiting room all the time. I want so much for Jaxson, he deserves the world.
And then I think about what he has coming in the next months. I can't believe we're scheduling appointments in August already. He has urology appointments, scans on his head and back, cleft palate surgery, potential skull surgery, eye appointment, all of his regular therapies plus we're adding speech, audiology, HMG and RIHP appointments, a well baby check, and, oh yeah, his birthday! And then we're into September where he'll go back to cardiology for a checkup. It's overwhelming. We have an entire page of follow-up appointments each time we leave the doctor because they print out the upcoming appointments you have. It's just so much.
The hardest part for me is waiting to see about the skull. They can't do anything else with the front of his head because they already advanced it as far as they could. Which means they'll have to somehow expand the back of his head, which is flat. I have no idea how they are going to do that. You can't round bones that aren't rounded. So, what, will they take off part of his skull and put in some kind of plate? Will they have to do bone grafting? How long will it take and will he need a transfusion? What's the recovery time? How restricted is his activity going to be afterward? Have you ever tried to make a baby stay confined? Jaxson hates it. He wants to be on the floor all the time. There are so many unanswered questions, and everything is a waiting game.Everything in my life is a waiting game right now. I'm on the edge of my seat all the time, there's a tightness in my chest ready to burst into adrenaline when the time comes. Sleep, even though Jaxson actually sleeps through the night now, is nonexistent. Leaving the house is a chore. I'm irritable and moody. And I feel bad for Jayson and the kids because I have no control over any of it. I'm going to see if the doctor thinks I should up my meds when I go next week, just to make sure I don't lose my mind.
Well Jaxson is waking up for his lunch so I guess I'd better feed him. Will update when there's more to tell you!
"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference."
I guess I'll start with Neonatology. Jaxson had a developmental assessment, which went really well. The woman that did the assessment said that Jaxson is at an 8 or 9 month level developmentally, which is an improvement over last time. That puts him about two months behind, and last time it was three, so he's catching up a little! Which is fabulous news, but we have an off-set to that news. We were referred to Neurology. Jaxson has been sitting on his own and crawling for about a month now. About two weeks ago, Jaxson started doing this thing when he crawls. He stops for whatever reason and leans on one side (doesn't matter which one). He'll sit there just fine for a little bit and then he'll start shaking/rocking back and forth. He does the same thing sometimes when he's on all fours. He'll stop and nod his head up and down repeatedly. He doesn't lose consciousness or anything, but it's definitely not normal. He also has a habit of kicking the hard plastic piece of his bouncer or the hardwood floors when he's laying on his back. He kicks hard. We think that it should definitely hurt him and it does not. Then, when we were at audiology on Wednesday, he was sitting by a door and purposely jerking his head back to hit the door with the back of his head. I moved him and he stopped, but that's still not okay. And he likes to bang the back of his head off of our chests if he's sitting on our laps. So we're not really sure what's going on there, but hopefully neurology will have some answers. Overall, Jaxson's Neonatology appointment went well. He's following his own little growth curve a little under the 3rd percentile, but as long as he's not losing weight they said to keep doing what we are doing. Which is what I was going to do anyway, I don't hold a lot of stock in those charts.
After Neonatology, Jaxson and I came home for a little bit to have lunch before we left again for Neurosurgery. The appointment was a follow-up to his spine surgery. We got our referrals back to OT and PT, so we'll be spending a lot more time at the hospital again, but that's okay. Dr. Jackson said that his spine healed up great and that Jax looks good. Then there's more bad news. Jaxson's head isn't growing as fast as it should be. His head measures 42cm and he should be at 43.8cm. I don't really know what that means, except that they're concerned and they want another look at it. They were going to do a scan on his spine again anyway, just to make sure nothing tethered back up and the spinal fluid they pulled hasn't come back. So now when they do that scan, they are doing another CT of his skull. The scans will be done at the end of June so they can look at it before the cleft surgery in July. If his skull needs redone, they'll probably do that before the cleft. They are also going to take a second look at his ventricles. They were a little prominent on the last scan, nothing major I guess, and it could have been due to his head being constricted. But with everything else, they will take a second look at those too. And he wants another test to check Jaxson's kidneys again.
In between the two appointments, I received a call from Genetics. Dr. Hickey wants to follow up with Jaxson too. We didn't get an appointment scheduled because he is booked through July and the August calendar isn't open yet. So I have to call back in a couple of weeks to schedule the appointment. Since there's new information for Jaxson now, and there will be even more by August, I'm hoping that he'll have something to tell us. I am so tired of this waiting game. So many disorders and conditions affect development, that the doctors have mostly been just tracking everything and fixing the things that are fixable. Which is fine, except that we have no answers. I have done so much research and have not found one thing that fits Jaxson. I can find things that cover some of his issues, but not all of them combined. Hell, maybe he'll have something named after him. I don't know, it's just so frustrating. The doctors keep telling us that we're doing all of the right things to make sure he's treated properly, but until I know for sure what his diagnosis is going to be, I won't be able to trust that.
When I was on my way home, I called Jayson to tell him what was going on. His response was a heavy sigh and he asked, "It kinda feels like we're starting round two, doesn't it?" I said, "Yeah, it sure does." It's like we get amazing news about his development and how he's progressing by leaps and bounds, but then we take a step back with his body. I'm trying so hard to stay positive, but it's not easy. I sit here and think about everything Jaxson has gone through and I wonder why he can't just be done? Why do things keep popping up that need addressed? Why can't he be like a "normal" baby and not go to the hospital at least twice a week? I just want to grab him up and cuddle him forever and tell him that everything is going to be okay. I want to tell him that he's perfect the way he is and that he is special. I want to protect him from all of the craziness in the world, not take him to a place that is always stirring with craziness. I want him to always be as happy as he is now so he can keep lighting up the world with that smile. I don't want him to know pain or loneliness, although my rational brain tells me he will experience both in life. I just want him to be a regular boy and experience regular things and not be stuck in a waiting room all the time. I want so much for Jaxson, he deserves the world.
And then I think about what he has coming in the next months. I can't believe we're scheduling appointments in August already. He has urology appointments, scans on his head and back, cleft palate surgery, potential skull surgery, eye appointment, all of his regular therapies plus we're adding speech, audiology, HMG and RIHP appointments, a well baby check, and, oh yeah, his birthday! And then we're into September where he'll go back to cardiology for a checkup. It's overwhelming. We have an entire page of follow-up appointments each time we leave the doctor because they print out the upcoming appointments you have. It's just so much.
The hardest part for me is waiting to see about the skull. They can't do anything else with the front of his head because they already advanced it as far as they could. Which means they'll have to somehow expand the back of his head, which is flat. I have no idea how they are going to do that. You can't round bones that aren't rounded. So, what, will they take off part of his skull and put in some kind of plate? Will they have to do bone grafting? How long will it take and will he need a transfusion? What's the recovery time? How restricted is his activity going to be afterward? Have you ever tried to make a baby stay confined? Jaxson hates it. He wants to be on the floor all the time. There are so many unanswered questions, and everything is a waiting game.Everything in my life is a waiting game right now. I'm on the edge of my seat all the time, there's a tightness in my chest ready to burst into adrenaline when the time comes. Sleep, even though Jaxson actually sleeps through the night now, is nonexistent. Leaving the house is a chore. I'm irritable and moody. And I feel bad for Jayson and the kids because I have no control over any of it. I'm going to see if the doctor thinks I should up my meds when I go next week, just to make sure I don't lose my mind.
Well Jaxson is waking up for his lunch so I guess I'd better feed him. Will update when there's more to tell you!
"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference."
Thursday, May 16, 2013
Development Progress
Jaxson had an appointment this morning with his OT from Help Me Grow, whom we absolutely love. Today was her last visit because she's moving to Arizona, and I think Jaxson knew something was up because he showed off big time!
Two weeks ago when Mary Helen was here, she had written down that Jaxson was scooting backwards and only crawling about 6 steps when motivated. He was sitting on his own and able to play with his keys while sitting. He wasn't making any words or trying that hard, he wasn't eating well from the spoon and he still wasn't sleeping well. Mind you, Jaxson had spine surgery on March 29 and was restricted on what activity he was allowed to do, so I'm sure that had a lot to do with it. But he was able to do the signs for mommy and daddy and he could wave. He was not able to catch himself if he fell over while sitting, and when he leaned to one side while on his belly, his arm was almost fully extended.
Fast forward to today. Jaxson is up to a half-jar of baby food per day, mixed with rice. He crawls all over the place without hesitation. He has some issues with his legs getting stuck under him when he leans to the side, but most of the time he can work it out on his own. When he does lean to the side, he's almost in a sitting position and he can hold a toy and chew on it while he's leaned over. He not only does the sign for mommy, but says "mama" quite clearly. Sometimes you can understand him saying hi or yay, but there are no consonant sounds, just the vowels. But he's doing very well with his language and now we're working on the signs for more and milk. He now sleeps much better than he ever has. He still wakes up most nights, but it's pretty easy to get him to go back down so it's much more tolerable. He catches himself if he loses his balance while sitting. He can pick up a toy (heavier than his keys) and hold it with one hand while playing with it with the other. He can stand holding onto his exersaucer for a few seconds. He can't pull himself up, but he will stand there and hang on while playing if we sit behind him. The biggest development actually occurred while Mary Helen was here: Jaxson went from crawling to sitting five times! Prior to today, he was unable to do that, and he would get mad when he wanted to sit and couldn't do it alone.
It was such a joy to see how excited Mary Helen was over Jaxson's progress. He has improved leaps and bounds over the last two weeks alone, and he's only getting better. I know it won't be long before he's caught up to his cousin and running all over the place! The next step is to get a ball for him to lay on and work on catching himself in all directions. Also we are to work on clapping and tapping toys together. He's so close as it is, it won't take much work to get him there. He just needs to get that core strengthened so he can balance comfortably without thinking he needs a free hand. That means more time on the floor playing with Jeffrey and Buckeye, harassing them both to no end. They both love it though! Now if we could just get him to keep his hearing aids in his ears and out of his mouth...
--"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference."
Two weeks ago when Mary Helen was here, she had written down that Jaxson was scooting backwards and only crawling about 6 steps when motivated. He was sitting on his own and able to play with his keys while sitting. He wasn't making any words or trying that hard, he wasn't eating well from the spoon and he still wasn't sleeping well. Mind you, Jaxson had spine surgery on March 29 and was restricted on what activity he was allowed to do, so I'm sure that had a lot to do with it. But he was able to do the signs for mommy and daddy and he could wave. He was not able to catch himself if he fell over while sitting, and when he leaned to one side while on his belly, his arm was almost fully extended.
Fast forward to today. Jaxson is up to a half-jar of baby food per day, mixed with rice. He crawls all over the place without hesitation. He has some issues with his legs getting stuck under him when he leans to the side, but most of the time he can work it out on his own. When he does lean to the side, he's almost in a sitting position and he can hold a toy and chew on it while he's leaned over. He not only does the sign for mommy, but says "mama" quite clearly. Sometimes you can understand him saying hi or yay, but there are no consonant sounds, just the vowels. But he's doing very well with his language and now we're working on the signs for more and milk. He now sleeps much better than he ever has. He still wakes up most nights, but it's pretty easy to get him to go back down so it's much more tolerable. He catches himself if he loses his balance while sitting. He can pick up a toy (heavier than his keys) and hold it with one hand while playing with it with the other. He can stand holding onto his exersaucer for a few seconds. He can't pull himself up, but he will stand there and hang on while playing if we sit behind him. The biggest development actually occurred while Mary Helen was here: Jaxson went from crawling to sitting five times! Prior to today, he was unable to do that, and he would get mad when he wanted to sit and couldn't do it alone.
It was such a joy to see how excited Mary Helen was over Jaxson's progress. He has improved leaps and bounds over the last two weeks alone, and he's only getting better. I know it won't be long before he's caught up to his cousin and running all over the place! The next step is to get a ball for him to lay on and work on catching himself in all directions. Also we are to work on clapping and tapping toys together. He's so close as it is, it won't take much work to get him there. He just needs to get that core strengthened so he can balance comfortably without thinking he needs a free hand. That means more time on the floor playing with Jeffrey and Buckeye, harassing them both to no end. They both love it though! Now if we could just get him to keep his hearing aids in his ears and out of his mouth...
--"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference."
Tuesday, May 14, 2013
Vision Test, Sleep Issue, Cleft Repair, Etc.
I promised an update last week and I just didn't get to it. I apologize. Last Thursday, Jayson called me at work and let me know that there was clear liquid coming out of Jaxson's ear. I called the doctor and we were able to get him in that evening. The god news is that the tubes are doing their job. The bad news is that because he has hearing aids, he is more susceptible to ear infections. So when we went to see the ENT yesterday (it was a prescheduled appointment), he told us to keep the drops on hand and if we ever need a refill to call his office. He said that if it happens again, we can just use the drops. If the liquid is discolored at all, then we'll need to take him in, but as long as it's clear we can just use the drops and it will clear up pretty quickly. So that is nice because that means we don't have to rush him off to the doctor every time his ears decide to act up.
Early Thursday morning, I took Jaxson to the eye doctor for his first vision screening. Unless they did one in the NICU I am unaware of, which I doubt. I've had strong concerns about Jaxson's eyes, given my own issues with strabismus that runs in my family. His vision alone is fine. He's a little far-sighted, but not out of the normal range for a baby his age. The crazy thing is that the doctor said his right eye isn't pulling in (same eye as me and my mom). He said that when Jaxson looks to the right, his left eye doesn't go in all the way, so if we ever see him turning his head a little to see something, that's why. He's compensating well for it right now, so no action. But we go back in three months to have his eyes checked again just to see how he's progressing. Personally, I think the doctor is crazy. I'm pretty sure his right eye is turning in, even if his left eye isn't fully cooperating. So I'm keeping an eye on it at home and I'll see what he says in three months. Nothing can be done about it right now anyway, so hopefully it's just a phase. I know I had the same concerns about Jeffrey and his eyes are fine now, so it could pass and be part of his slow development. The doctor also said that Jaxson's eyes are a little wide-set, which you can tell by looking at him. But they measured wide too, so that's something else to add to the list.
The reason for the ENT visit on Monday was a follow up to the sleep study. Jaxson snored 95% of the night during the study, so they wanted to see if there was anything obstructing his airway. The doctor read the report while I was there and said that he didn't see anything that needed action at this point. I don't know what that means, and for whatever reason I didn't push for an answer. But I guess it's something else for us to monitor and keep them updated about. Jaxson is now on Claritin every day, poor little guy's eyes turn read and watery within minutes of being outside without it. And we think that's helping.
We also think that the spinal surgery was a HUGE help in a lot of ways. He is definitely sleeping better, we're down to him waking up once a night on most nights. Sometimes he doesn't wake up at all (not often, but we'll take what we can get!) and sometimes he still wakes up at least twice, but his good nights are coming more and more frequently.He's also taking two naps a day on a regular basis and I think he's finally adjusting to a schedule. Because of his delays, I just think it took his little body more time than normal to adjust, plus I think his back was hurting him more than we realized. A tethered cord can cause lower back pain, so getting that fixed has been huge for his development.
Speaking of development, Jaxson officially crawls! He's pretty jerky with his movements, but he's pretty much only happy if he's on the floor playing with toys. He loves playing with Jeffrey in the front room and getting whatever he can in his mouth. Last night, he ate two rice rusks all by himself. It's the first time we've gotten him to understand that they are food and he's supposed to eat them! We haven't tried to give him any for awhile and it was like he'd been eating them for a week. He hasn't taken to anything smaller yet, but we're working on that too. He is starting to take more from a spoon too. We have to mix all of his food with rice or he won't touch it, but he eats about half a jar per day now, as opposed to a jar lasting 3 days or half of it going to waste. He's also starting to babble! His favorite thing to say is, "mama". It's actually the only thing he says haha. He makes the funniest face when he says it too. It's like he has to really try to make the sound, but he loves saying it to get my attention and then giggling at me when I respond. He is so much fun right now! We're also working on standing. I'm not sure how long it will be before he can pull himself up, but if we stand him up, he can hold on to his exersaucer for a little while and stand on his own while playing with one of the toys attached to it. We still have to sit behind him because it doesn't last a very long time, but it's getting better and each time he wants to try for longer. He has improved leaps and bounds over the last month and it's so great to see him acting like any other baby his age, at least mos of the time!
Jaxson's cleft palate repair has been scheduled for July 29. It's a pretty quick procedure and I think he will only be there for one night, so it's not all that bad. They saved the easiest one for last! Of course, knowing Jaxson, we'll still be there for three nights. He doesn't know how to do anything the easy way! I'm actually surprised they didn't schedule the surgery for July 3rd. He was in the hospital on Christmas and Easter, why not his birthday?
The biggest news to share, though, is that I am on medical leave from work for 6 weeks. The time finally came when I could no longer properly do my job and be the mom of a child with a disability. Jeffrey and Jaxson were both miserable, Jayson and I had no reign on our tempers, and my production at work went down the drain. I talked to the doctor who told me to take my Effexor for one more month and then I'm going back to report to him how I am doing. I'm also starting counseling on Friday to address some things that are going on with me. Thanks to Sammy and listening to/watching her deal with post-concussion syndrome, I've learned to become more in-tune with my body and understand what it's trying to tell me. I'm just glad I was able to recognize it now instead of before it was too late. I do no one any good if I don't take care of myself, so that's where I am. The break from work will be nice for everyone. And when I go back to work, I am dropping down to a part-time CSR. Jayson is going to go back to work to make up the difference, but it's clear that I cannot continue to work full-time and survive.
I'm so excited for everything that is going on with us right now. I'm taking the right steps to care for myself, Jayson gets to go back to work (which he very much wants to do), Jaxson is improving every day and Jeffrey is throwing less fits. I am also excited that both Jeffrey and Jaxson will be headed to school this fall! Help Me Grow is helping us get them both into the same Head Start school! I was so excited to hear that we would be able to do that because I wanted so badly to keep them together. Because Jaxson qualifies with his medical conditions, Jeffrey can go in as a normal peer. It means we don't have to qualify income-wise and we only have to pay $100 a month. Huge, huge, huge. Jeffrey will be so excited (and already is) to go back to school, and he's got such a caring and sensitive way about him that being around kids with disabilities will be nothing for him. He's fabulous with Jaxson and I think it will be so good for him to be in that environment until we get him into kindergarten.
Overall, things are on a positive swing for the Burks family. Jaxson is almost done with surgeries (5 in one year boggles my mind) and we're getting everything else straightened out slowly but surely. I still have bad days, but not today. Today is a good day.
"Life is not what it's supposed to be, it is the way it is. The way you cope with it is what makes the difference."
Early Thursday morning, I took Jaxson to the eye doctor for his first vision screening. Unless they did one in the NICU I am unaware of, which I doubt. I've had strong concerns about Jaxson's eyes, given my own issues with strabismus that runs in my family. His vision alone is fine. He's a little far-sighted, but not out of the normal range for a baby his age. The crazy thing is that the doctor said his right eye isn't pulling in (same eye as me and my mom). He said that when Jaxson looks to the right, his left eye doesn't go in all the way, so if we ever see him turning his head a little to see something, that's why. He's compensating well for it right now, so no action. But we go back in three months to have his eyes checked again just to see how he's progressing. Personally, I think the doctor is crazy. I'm pretty sure his right eye is turning in, even if his left eye isn't fully cooperating. So I'm keeping an eye on it at home and I'll see what he says in three months. Nothing can be done about it right now anyway, so hopefully it's just a phase. I know I had the same concerns about Jeffrey and his eyes are fine now, so it could pass and be part of his slow development. The doctor also said that Jaxson's eyes are a little wide-set, which you can tell by looking at him. But they measured wide too, so that's something else to add to the list.
The reason for the ENT visit on Monday was a follow up to the sleep study. Jaxson snored 95% of the night during the study, so they wanted to see if there was anything obstructing his airway. The doctor read the report while I was there and said that he didn't see anything that needed action at this point. I don't know what that means, and for whatever reason I didn't push for an answer. But I guess it's something else for us to monitor and keep them updated about. Jaxson is now on Claritin every day, poor little guy's eyes turn read and watery within minutes of being outside without it. And we think that's helping.
We also think that the spinal surgery was a HUGE help in a lot of ways. He is definitely sleeping better, we're down to him waking up once a night on most nights. Sometimes he doesn't wake up at all (not often, but we'll take what we can get!) and sometimes he still wakes up at least twice, but his good nights are coming more and more frequently.He's also taking two naps a day on a regular basis and I think he's finally adjusting to a schedule. Because of his delays, I just think it took his little body more time than normal to adjust, plus I think his back was hurting him more than we realized. A tethered cord can cause lower back pain, so getting that fixed has been huge for his development.
Speaking of development, Jaxson officially crawls! He's pretty jerky with his movements, but he's pretty much only happy if he's on the floor playing with toys. He loves playing with Jeffrey in the front room and getting whatever he can in his mouth. Last night, he ate two rice rusks all by himself. It's the first time we've gotten him to understand that they are food and he's supposed to eat them! We haven't tried to give him any for awhile and it was like he'd been eating them for a week. He hasn't taken to anything smaller yet, but we're working on that too. He is starting to take more from a spoon too. We have to mix all of his food with rice or he won't touch it, but he eats about half a jar per day now, as opposed to a jar lasting 3 days or half of it going to waste. He's also starting to babble! His favorite thing to say is, "mama". It's actually the only thing he says haha. He makes the funniest face when he says it too. It's like he has to really try to make the sound, but he loves saying it to get my attention and then giggling at me when I respond. He is so much fun right now! We're also working on standing. I'm not sure how long it will be before he can pull himself up, but if we stand him up, he can hold on to his exersaucer for a little while and stand on his own while playing with one of the toys attached to it. We still have to sit behind him because it doesn't last a very long time, but it's getting better and each time he wants to try for longer. He has improved leaps and bounds over the last month and it's so great to see him acting like any other baby his age, at least mos of the time!
Jaxson's cleft palate repair has been scheduled for July 29. It's a pretty quick procedure and I think he will only be there for one night, so it's not all that bad. They saved the easiest one for last! Of course, knowing Jaxson, we'll still be there for three nights. He doesn't know how to do anything the easy way! I'm actually surprised they didn't schedule the surgery for July 3rd. He was in the hospital on Christmas and Easter, why not his birthday?
The biggest news to share, though, is that I am on medical leave from work for 6 weeks. The time finally came when I could no longer properly do my job and be the mom of a child with a disability. Jeffrey and Jaxson were both miserable, Jayson and I had no reign on our tempers, and my production at work went down the drain. I talked to the doctor who told me to take my Effexor for one more month and then I'm going back to report to him how I am doing. I'm also starting counseling on Friday to address some things that are going on with me. Thanks to Sammy and listening to/watching her deal with post-concussion syndrome, I've learned to become more in-tune with my body and understand what it's trying to tell me. I'm just glad I was able to recognize it now instead of before it was too late. I do no one any good if I don't take care of myself, so that's where I am. The break from work will be nice for everyone. And when I go back to work, I am dropping down to a part-time CSR. Jayson is going to go back to work to make up the difference, but it's clear that I cannot continue to work full-time and survive.
I'm so excited for everything that is going on with us right now. I'm taking the right steps to care for myself, Jayson gets to go back to work (which he very much wants to do), Jaxson is improving every day and Jeffrey is throwing less fits. I am also excited that both Jeffrey and Jaxson will be headed to school this fall! Help Me Grow is helping us get them both into the same Head Start school! I was so excited to hear that we would be able to do that because I wanted so badly to keep them together. Because Jaxson qualifies with his medical conditions, Jeffrey can go in as a normal peer. It means we don't have to qualify income-wise and we only have to pay $100 a month. Huge, huge, huge. Jeffrey will be so excited (and already is) to go back to school, and he's got such a caring and sensitive way about him that being around kids with disabilities will be nothing for him. He's fabulous with Jaxson and I think it will be so good for him to be in that environment until we get him into kindergarten.
Overall, things are on a positive swing for the Burks family. Jaxson is almost done with surgeries (5 in one year boggles my mind) and we're getting everything else straightened out slowly but surely. I still have bad days, but not today. Today is a good day.
"Life is not what it's supposed to be, it is the way it is. The way you cope with it is what makes the difference."
Sunday, April 14, 2013
Spinal Surgery and ABR
So I'm a few weeks behind, as usual. Jaxson had his tethered cord release surgery on March 29. We had several questions for Dr. Jackson (neurologist), which he did a fantastic job of answering. What causes a tethered cord? For those of you that don't know, the bottom of your spine typically flows free. When you have a tethered cord, there is a fatty mass, cyst or scar tissue that the spine attaches to. In infants, it is typically a cyst or fatty mass that's easy to remove. In adults, it's either scar tissue or a cyst caused by some type of injury. In Jaxson, nothing is normal. Dr. Jackson had to make a larger incision than normal and had to cut deeper than normal. Jaxson has scar tissue, and it's likely that we will never know what it's from. He had to cut into the dura a little bit to release the spine, and he also had to do a laminectomy. You can read about what that is here: http://www.nlm.nih.gov/medlineplus/ency/article/007389.htm. When kids go through a tethered cord release, the surgeon will go in and remove whatever the spine is attached to. A cyst or fatty mass is pretty simple to remove, but with scare tissue you can only do so much. Dr. Jackson cleaned up Jax as best he could, but it took longer than what the procedure was scheduled for. Shocking, I know. Because Jaxson had a hearing test at the same time, he was under anesthesia from 7:30am and finally woke up around 5pm. He was in surgery for nearly 5 hours, normally the procedure is 3-4. He also decided that he wanted to stay an extra night at the hospital, so instead of a 2 day stay, we had 3.
That was one of the hardest weekends I've ever lived through. Not only did I not see my baby for over 8 hours, but I wasn't allowed to pick him up for 2 days. He had to lay flat for that long to make sure that no spinal fluid was going to leak. It also stabilized his spine after the surgery. Listening to him cry in pain and not be able to pick him up was horrible. I was actually mean to the nurse and PSA I had that night because I was exhausted (we had to be there at 5:45am that day) and I wasn't getting any rest due to Jaxson waking up. But they were still so nice to me and did everything they could to help. The next day, to top it off, Jaxson decided that it would be a good idea to pull one of his IVs out. I was sitting on the couch when he did it and when he started crying I checked on him. Blood was everywhere! I thought he was throwing up blood and almost had a heart attack until I saw his hand. Then I got pressure on it until the nurse came in. I helped them change his bed without moving him too much and we decided not to put that one back in since he had another one. That was an instant, "OK I'm awake" moment! I went home that night and Jayson stayed with Jaxson, and by the time I got back on Sunday I was allowed to hold him. Best cuddle of my life! All of the nurses we had were fantastic, as usual, and we got to go home on Monday, so I got to spend a few hours with everyone at home before going back to work on Tuesday.
Prior to the spinal surgery, Jaxson had a follow-up ABR (auditory brainstem response). Since he has the tubes in his ears now, this test was finally able to give us some answers on his hearing. Turns out Jaxson has mild/moderate hearing loss in both ears. Hearing aids have been ordered and we should get a call next week to go in for a fitting. Part of the reason the test took so long is because the Audiologist went ahead and took ear molds while he was knocked out. Made things much easier for everyone! We opted to go with the Phonak Nios S H2O because it's waterproof and we don't have to worry about bath time or going swimming. At his fitting, they are also going to do some additional behavioral testing to get an additional baseline of his hearing without the aids. Then they'll put the aids on and see the difference in his response and if the aid is programmed correctly. The things they can do with hearing aids is simply amazing. These particular aids do not affect what he can actually hear, it only assists with the pitches, tones and sounds he has trouble hearing. And if his hearing improves, it can be reprogrammed so that the improved hearing can continue to develop on its own. And you can pick colors. Jaxson's will be scarlet and grey, of course! Pretty sweet if you ask me.
I have to send a huge thank you do my sister and parents for keeping Jeffrey for two nights. He was totally out of sorts when he came home, but eventually he got back to his normal self. He's the most perfect little boy a parent could ask for. So sweet and loving, always wanting to help take care of his brother and Buckeye, and always learning something new. I do not know any other four year old that you can have a complete conversation with that actually makes sense. He loves to tell secrets and stories and just be silly. He wants constant attention and loves to make us laugh. He also likes to get down on the floor and help teach his brother how to crawl, or just play with him and have a good time. I worry about his being so skinny his willingness to only eat a few foods, but he's built just like his daddy and has his daddy's eating habits, so I suppose it's to be expected. The doctor's aren't worried so I guess I shouldn't be either!
You know, when I tell people about Jaxson and all of his struggles, the response is always the same: "Oh I'm so sorry," or "I don't know how you do it." But it's not like that. Jaxson is such a happy baby, so loving and cuddly and playful. Is it hard to have a child with a disability? A child who needs extra attention at all times? A child that requires multiple surgeries with still no answer as to why all of this is happening? Of course it is. But it's not what you think. It's hard because I feel every bit of pain he feels. I struggle as long as he struggles. It is not hard because I (we) have to sacrifice, it's hard because we love him so much and there is nothing we can do but follow the doctor's orders. It's hard because there's no explanation and I worry that we are missing something or that we aren't doing enough. But there's an upside: Every time that baby smiles, laughs, or buries his head in my shoulder, my heart melts. There is nothing better than having a baby that, even with life starting out so rough, knows that he's loved and cherished. He knows he's going to be fed at certain times and that he has a roof over his head. He knows nothing of being alone or left to fend for himself because we're too busy for him. That was never an option. Jaxson is every bit as perfect as Jeffrey and I love them both just as fiercely.
Jaxson has a follow-up appointment with neurology this week for a wound check. He has an ENT appointment coming up to see if there is anything obstructing his airway that would cause a breathing problem and make him wake up every night, or keep him from sleeping period. He still only sleeps, at MOST 6 hours in a 24 hour period. He'll have a well-baby check at the end of the month and we may have him tested for allergies, and he has his first vision screening in May. He had a urology appointment last week and they discovered that the debris/cyst that was in his right kidney is gone, likely because the spinal surgery relieved pressure and it was able to clean itself out. So back for another urine test in July and an ultrasound in October. He still has the two ureters, so they will be monitoring for reflux. He'll go back to Cardiology in September, but the next big thing is his cleft palate surgery most likely in July. Oh, he'll have a CT on his head and follow-up MRI on his spine in July as well. So we're still very busy with appointments for him, those don't even count his therapies, which are weekly.
Jaxson's ride started on July 4th, 2012 and his journey continues. I can't believe he's going to be one year old in just a few months. Time is flying!
I will leave you with this, a phrase that will be incorporated into my next tattoo: Life is not what it's supposed to be, it is the way it is. The way you cope with it is what makes the difference.
That was one of the hardest weekends I've ever lived through. Not only did I not see my baby for over 8 hours, but I wasn't allowed to pick him up for 2 days. He had to lay flat for that long to make sure that no spinal fluid was going to leak. It also stabilized his spine after the surgery. Listening to him cry in pain and not be able to pick him up was horrible. I was actually mean to the nurse and PSA I had that night because I was exhausted (we had to be there at 5:45am that day) and I wasn't getting any rest due to Jaxson waking up. But they were still so nice to me and did everything they could to help. The next day, to top it off, Jaxson decided that it would be a good idea to pull one of his IVs out. I was sitting on the couch when he did it and when he started crying I checked on him. Blood was everywhere! I thought he was throwing up blood and almost had a heart attack until I saw his hand. Then I got pressure on it until the nurse came in. I helped them change his bed without moving him too much and we decided not to put that one back in since he had another one. That was an instant, "OK I'm awake" moment! I went home that night and Jayson stayed with Jaxson, and by the time I got back on Sunday I was allowed to hold him. Best cuddle of my life! All of the nurses we had were fantastic, as usual, and we got to go home on Monday, so I got to spend a few hours with everyone at home before going back to work on Tuesday.
Prior to the spinal surgery, Jaxson had a follow-up ABR (auditory brainstem response). Since he has the tubes in his ears now, this test was finally able to give us some answers on his hearing. Turns out Jaxson has mild/moderate hearing loss in both ears. Hearing aids have been ordered and we should get a call next week to go in for a fitting. Part of the reason the test took so long is because the Audiologist went ahead and took ear molds while he was knocked out. Made things much easier for everyone! We opted to go with the Phonak Nios S H2O because it's waterproof and we don't have to worry about bath time or going swimming. At his fitting, they are also going to do some additional behavioral testing to get an additional baseline of his hearing without the aids. Then they'll put the aids on and see the difference in his response and if the aid is programmed correctly. The things they can do with hearing aids is simply amazing. These particular aids do not affect what he can actually hear, it only assists with the pitches, tones and sounds he has trouble hearing. And if his hearing improves, it can be reprogrammed so that the improved hearing can continue to develop on its own. And you can pick colors. Jaxson's will be scarlet and grey, of course! Pretty sweet if you ask me.
I have to send a huge thank you do my sister and parents for keeping Jeffrey for two nights. He was totally out of sorts when he came home, but eventually he got back to his normal self. He's the most perfect little boy a parent could ask for. So sweet and loving, always wanting to help take care of his brother and Buckeye, and always learning something new. I do not know any other four year old that you can have a complete conversation with that actually makes sense. He loves to tell secrets and stories and just be silly. He wants constant attention and loves to make us laugh. He also likes to get down on the floor and help teach his brother how to crawl, or just play with him and have a good time. I worry about his being so skinny his willingness to only eat a few foods, but he's built just like his daddy and has his daddy's eating habits, so I suppose it's to be expected. The doctor's aren't worried so I guess I shouldn't be either!
You know, when I tell people about Jaxson and all of his struggles, the response is always the same: "Oh I'm so sorry," or "I don't know how you do it." But it's not like that. Jaxson is such a happy baby, so loving and cuddly and playful. Is it hard to have a child with a disability? A child who needs extra attention at all times? A child that requires multiple surgeries with still no answer as to why all of this is happening? Of course it is. But it's not what you think. It's hard because I feel every bit of pain he feels. I struggle as long as he struggles. It is not hard because I (we) have to sacrifice, it's hard because we love him so much and there is nothing we can do but follow the doctor's orders. It's hard because there's no explanation and I worry that we are missing something or that we aren't doing enough. But there's an upside: Every time that baby smiles, laughs, or buries his head in my shoulder, my heart melts. There is nothing better than having a baby that, even with life starting out so rough, knows that he's loved and cherished. He knows he's going to be fed at certain times and that he has a roof over his head. He knows nothing of being alone or left to fend for himself because we're too busy for him. That was never an option. Jaxson is every bit as perfect as Jeffrey and I love them both just as fiercely.
Jaxson has a follow-up appointment with neurology this week for a wound check. He has an ENT appointment coming up to see if there is anything obstructing his airway that would cause a breathing problem and make him wake up every night, or keep him from sleeping period. He still only sleeps, at MOST 6 hours in a 24 hour period. He'll have a well-baby check at the end of the month and we may have him tested for allergies, and he has his first vision screening in May. He had a urology appointment last week and they discovered that the debris/cyst that was in his right kidney is gone, likely because the spinal surgery relieved pressure and it was able to clean itself out. So back for another urine test in July and an ultrasound in October. He still has the two ureters, so they will be monitoring for reflux. He'll go back to Cardiology in September, but the next big thing is his cleft palate surgery most likely in July. Oh, he'll have a CT on his head and follow-up MRI on his spine in July as well. So we're still very busy with appointments for him, those don't even count his therapies, which are weekly.
Jaxson's ride started on July 4th, 2012 and his journey continues. I can't believe he's going to be one year old in just a few months. Time is flying!
I will leave you with this, a phrase that will be incorporated into my next tattoo: Life is not what it's supposed to be, it is the way it is. The way you cope with it is what makes the difference.
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