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."
Friday, May 24, 2013
Thursday, May 16, 2013
Development Progress
Jaxson had an appointment this morning with his OT from Help Me Grow, whom we absolutely love. Today was her last visit because she's moving to Arizona, and I think Jaxson knew something was up because he showed off big time!
Two weeks ago when Mary Helen was here, she had written down that Jaxson was scooting backwards and only crawling about 6 steps when motivated. He was sitting on his own and able to play with his keys while sitting. He wasn't making any words or trying that hard, he wasn't eating well from the spoon and he still wasn't sleeping well. Mind you, Jaxson had spine surgery on March 29 and was restricted on what activity he was allowed to do, so I'm sure that had a lot to do with it. But he was able to do the signs for mommy and daddy and he could wave. He was not able to catch himself if he fell over while sitting, and when he leaned to one side while on his belly, his arm was almost fully extended.
Fast forward to today. Jaxson is up to a half-jar of baby food per day, mixed with rice. He crawls all over the place without hesitation. He has some issues with his legs getting stuck under him when he leans to the side, but most of the time he can work it out on his own. When he does lean to the side, he's almost in a sitting position and he can hold a toy and chew on it while he's leaned over. He not only does the sign for mommy, but says "mama" quite clearly. Sometimes you can understand him saying hi or yay, but there are no consonant sounds, just the vowels. But he's doing very well with his language and now we're working on the signs for more and milk. He now sleeps much better than he ever has. He still wakes up most nights, but it's pretty easy to get him to go back down so it's much more tolerable. He catches himself if he loses his balance while sitting. He can pick up a toy (heavier than his keys) and hold it with one hand while playing with it with the other. He can stand holding onto his exersaucer for a few seconds. He can't pull himself up, but he will stand there and hang on while playing if we sit behind him. The biggest development actually occurred while Mary Helen was here: Jaxson went from crawling to sitting five times! Prior to today, he was unable to do that, and he would get mad when he wanted to sit and couldn't do it alone.
It was such a joy to see how excited Mary Helen was over Jaxson's progress. He has improved leaps and bounds over the last two weeks alone, and he's only getting better. I know it won't be long before he's caught up to his cousin and running all over the place! The next step is to get a ball for him to lay on and work on catching himself in all directions. Also we are to work on clapping and tapping toys together. He's so close as it is, it won't take much work to get him there. He just needs to get that core strengthened so he can balance comfortably without thinking he needs a free hand. That means more time on the floor playing with Jeffrey and Buckeye, harassing them both to no end. They both love it though! Now if we could just get him to keep his hearing aids in his ears and out of his mouth...
--"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference."
Two weeks ago when Mary Helen was here, she had written down that Jaxson was scooting backwards and only crawling about 6 steps when motivated. He was sitting on his own and able to play with his keys while sitting. He wasn't making any words or trying that hard, he wasn't eating well from the spoon and he still wasn't sleeping well. Mind you, Jaxson had spine surgery on March 29 and was restricted on what activity he was allowed to do, so I'm sure that had a lot to do with it. But he was able to do the signs for mommy and daddy and he could wave. He was not able to catch himself if he fell over while sitting, and when he leaned to one side while on his belly, his arm was almost fully extended.
Fast forward to today. Jaxson is up to a half-jar of baby food per day, mixed with rice. He crawls all over the place without hesitation. He has some issues with his legs getting stuck under him when he leans to the side, but most of the time he can work it out on his own. When he does lean to the side, he's almost in a sitting position and he can hold a toy and chew on it while he's leaned over. He not only does the sign for mommy, but says "mama" quite clearly. Sometimes you can understand him saying hi or yay, but there are no consonant sounds, just the vowels. But he's doing very well with his language and now we're working on the signs for more and milk. He now sleeps much better than he ever has. He still wakes up most nights, but it's pretty easy to get him to go back down so it's much more tolerable. He catches himself if he loses his balance while sitting. He can pick up a toy (heavier than his keys) and hold it with one hand while playing with it with the other. He can stand holding onto his exersaucer for a few seconds. He can't pull himself up, but he will stand there and hang on while playing if we sit behind him. The biggest development actually occurred while Mary Helen was here: Jaxson went from crawling to sitting five times! Prior to today, he was unable to do that, and he would get mad when he wanted to sit and couldn't do it alone.
It was such a joy to see how excited Mary Helen was over Jaxson's progress. He has improved leaps and bounds over the last two weeks alone, and he's only getting better. I know it won't be long before he's caught up to his cousin and running all over the place! The next step is to get a ball for him to lay on and work on catching himself in all directions. Also we are to work on clapping and tapping toys together. He's so close as it is, it won't take much work to get him there. He just needs to get that core strengthened so he can balance comfortably without thinking he needs a free hand. That means more time on the floor playing with Jeffrey and Buckeye, harassing them both to no end. They both love it though! Now if we could just get him to keep his hearing aids in his ears and out of his mouth...
--"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference."
Tuesday, May 14, 2013
Vision Test, Sleep Issue, Cleft Repair, Etc.
I promised an update last week and I just didn't get to it. I apologize. Last Thursday, Jayson called me at work and let me know that there was clear liquid coming out of Jaxson's ear. I called the doctor and we were able to get him in that evening. The god news is that the tubes are doing their job. The bad news is that because he has hearing aids, he is more susceptible to ear infections. So when we went to see the ENT yesterday (it was a prescheduled appointment), he told us to keep the drops on hand and if we ever need a refill to call his office. He said that if it happens again, we can just use the drops. If the liquid is discolored at all, then we'll need to take him in, but as long as it's clear we can just use the drops and it will clear up pretty quickly. So that is nice because that means we don't have to rush him off to the doctor every time his ears decide to act up.
Early Thursday morning, I took Jaxson to the eye doctor for his first vision screening. Unless they did one in the NICU I am unaware of, which I doubt. I've had strong concerns about Jaxson's eyes, given my own issues with strabismus that runs in my family. His vision alone is fine. He's a little far-sighted, but not out of the normal range for a baby his age. The crazy thing is that the doctor said his right eye isn't pulling in (same eye as me and my mom). He said that when Jaxson looks to the right, his left eye doesn't go in all the way, so if we ever see him turning his head a little to see something, that's why. He's compensating well for it right now, so no action. But we go back in three months to have his eyes checked again just to see how he's progressing. Personally, I think the doctor is crazy. I'm pretty sure his right eye is turning in, even if his left eye isn't fully cooperating. So I'm keeping an eye on it at home and I'll see what he says in three months. Nothing can be done about it right now anyway, so hopefully it's just a phase. I know I had the same concerns about Jeffrey and his eyes are fine now, so it could pass and be part of his slow development. The doctor also said that Jaxson's eyes are a little wide-set, which you can tell by looking at him. But they measured wide too, so that's something else to add to the list.
The reason for the ENT visit on Monday was a follow up to the sleep study. Jaxson snored 95% of the night during the study, so they wanted to see if there was anything obstructing his airway. The doctor read the report while I was there and said that he didn't see anything that needed action at this point. I don't know what that means, and for whatever reason I didn't push for an answer. But I guess it's something else for us to monitor and keep them updated about. Jaxson is now on Claritin every day, poor little guy's eyes turn read and watery within minutes of being outside without it. And we think that's helping.
We also think that the spinal surgery was a HUGE help in a lot of ways. He is definitely sleeping better, we're down to him waking up once a night on most nights. Sometimes he doesn't wake up at all (not often, but we'll take what we can get!) and sometimes he still wakes up at least twice, but his good nights are coming more and more frequently.He's also taking two naps a day on a regular basis and I think he's finally adjusting to a schedule. Because of his delays, I just think it took his little body more time than normal to adjust, plus I think his back was hurting him more than we realized. A tethered cord can cause lower back pain, so getting that fixed has been huge for his development.
Speaking of development, Jaxson officially crawls! He's pretty jerky with his movements, but he's pretty much only happy if he's on the floor playing with toys. He loves playing with Jeffrey in the front room and getting whatever he can in his mouth. Last night, he ate two rice rusks all by himself. It's the first time we've gotten him to understand that they are food and he's supposed to eat them! We haven't tried to give him any for awhile and it was like he'd been eating them for a week. He hasn't taken to anything smaller yet, but we're working on that too. He is starting to take more from a spoon too. We have to mix all of his food with rice or he won't touch it, but he eats about half a jar per day now, as opposed to a jar lasting 3 days or half of it going to waste. He's also starting to babble! His favorite thing to say is, "mama". It's actually the only thing he says haha. He makes the funniest face when he says it too. It's like he has to really try to make the sound, but he loves saying it to get my attention and then giggling at me when I respond. He is so much fun right now! We're also working on standing. I'm not sure how long it will be before he can pull himself up, but if we stand him up, he can hold on to his exersaucer for a little while and stand on his own while playing with one of the toys attached to it. We still have to sit behind him because it doesn't last a very long time, but it's getting better and each time he wants to try for longer. He has improved leaps and bounds over the last month and it's so great to see him acting like any other baby his age, at least mos of the time!
Jaxson's cleft palate repair has been scheduled for July 29. It's a pretty quick procedure and I think he will only be there for one night, so it's not all that bad. They saved the easiest one for last! Of course, knowing Jaxson, we'll still be there for three nights. He doesn't know how to do anything the easy way! I'm actually surprised they didn't schedule the surgery for July 3rd. He was in the hospital on Christmas and Easter, why not his birthday?
The biggest news to share, though, is that I am on medical leave from work for 6 weeks. The time finally came when I could no longer properly do my job and be the mom of a child with a disability. Jeffrey and Jaxson were both miserable, Jayson and I had no reign on our tempers, and my production at work went down the drain. I talked to the doctor who told me to take my Effexor for one more month and then I'm going back to report to him how I am doing. I'm also starting counseling on Friday to address some things that are going on with me. Thanks to Sammy and listening to/watching her deal with post-concussion syndrome, I've learned to become more in-tune with my body and understand what it's trying to tell me. I'm just glad I was able to recognize it now instead of before it was too late. I do no one any good if I don't take care of myself, so that's where I am. The break from work will be nice for everyone. And when I go back to work, I am dropping down to a part-time CSR. Jayson is going to go back to work to make up the difference, but it's clear that I cannot continue to work full-time and survive.
I'm so excited for everything that is going on with us right now. I'm taking the right steps to care for myself, Jayson gets to go back to work (which he very much wants to do), Jaxson is improving every day and Jeffrey is throwing less fits. I am also excited that both Jeffrey and Jaxson will be headed to school this fall! Help Me Grow is helping us get them both into the same Head Start school! I was so excited to hear that we would be able to do that because I wanted so badly to keep them together. Because Jaxson qualifies with his medical conditions, Jeffrey can go in as a normal peer. It means we don't have to qualify income-wise and we only have to pay $100 a month. Huge, huge, huge. Jeffrey will be so excited (and already is) to go back to school, and he's got such a caring and sensitive way about him that being around kids with disabilities will be nothing for him. He's fabulous with Jaxson and I think it will be so good for him to be in that environment until we get him into kindergarten.
Overall, things are on a positive swing for the Burks family. Jaxson is almost done with surgeries (5 in one year boggles my mind) and we're getting everything else straightened out slowly but surely. I still have bad days, but not today. Today is a good day.
"Life is not what it's supposed to be, it is the way it is. The way you cope with it is what makes the difference."
Early Thursday morning, I took Jaxson to the eye doctor for his first vision screening. Unless they did one in the NICU I am unaware of, which I doubt. I've had strong concerns about Jaxson's eyes, given my own issues with strabismus that runs in my family. His vision alone is fine. He's a little far-sighted, but not out of the normal range for a baby his age. The crazy thing is that the doctor said his right eye isn't pulling in (same eye as me and my mom). He said that when Jaxson looks to the right, his left eye doesn't go in all the way, so if we ever see him turning his head a little to see something, that's why. He's compensating well for it right now, so no action. But we go back in three months to have his eyes checked again just to see how he's progressing. Personally, I think the doctor is crazy. I'm pretty sure his right eye is turning in, even if his left eye isn't fully cooperating. So I'm keeping an eye on it at home and I'll see what he says in three months. Nothing can be done about it right now anyway, so hopefully it's just a phase. I know I had the same concerns about Jeffrey and his eyes are fine now, so it could pass and be part of his slow development. The doctor also said that Jaxson's eyes are a little wide-set, which you can tell by looking at him. But they measured wide too, so that's something else to add to the list.
The reason for the ENT visit on Monday was a follow up to the sleep study. Jaxson snored 95% of the night during the study, so they wanted to see if there was anything obstructing his airway. The doctor read the report while I was there and said that he didn't see anything that needed action at this point. I don't know what that means, and for whatever reason I didn't push for an answer. But I guess it's something else for us to monitor and keep them updated about. Jaxson is now on Claritin every day, poor little guy's eyes turn read and watery within minutes of being outside without it. And we think that's helping.
We also think that the spinal surgery was a HUGE help in a lot of ways. He is definitely sleeping better, we're down to him waking up once a night on most nights. Sometimes he doesn't wake up at all (not often, but we'll take what we can get!) and sometimes he still wakes up at least twice, but his good nights are coming more and more frequently.He's also taking two naps a day on a regular basis and I think he's finally adjusting to a schedule. Because of his delays, I just think it took his little body more time than normal to adjust, plus I think his back was hurting him more than we realized. A tethered cord can cause lower back pain, so getting that fixed has been huge for his development.
Speaking of development, Jaxson officially crawls! He's pretty jerky with his movements, but he's pretty much only happy if he's on the floor playing with toys. He loves playing with Jeffrey in the front room and getting whatever he can in his mouth. Last night, he ate two rice rusks all by himself. It's the first time we've gotten him to understand that they are food and he's supposed to eat them! We haven't tried to give him any for awhile and it was like he'd been eating them for a week. He hasn't taken to anything smaller yet, but we're working on that too. He is starting to take more from a spoon too. We have to mix all of his food with rice or he won't touch it, but he eats about half a jar per day now, as opposed to a jar lasting 3 days or half of it going to waste. He's also starting to babble! His favorite thing to say is, "mama". It's actually the only thing he says haha. He makes the funniest face when he says it too. It's like he has to really try to make the sound, but he loves saying it to get my attention and then giggling at me when I respond. He is so much fun right now! We're also working on standing. I'm not sure how long it will be before he can pull himself up, but if we stand him up, he can hold on to his exersaucer for a little while and stand on his own while playing with one of the toys attached to it. We still have to sit behind him because it doesn't last a very long time, but it's getting better and each time he wants to try for longer. He has improved leaps and bounds over the last month and it's so great to see him acting like any other baby his age, at least mos of the time!
Jaxson's cleft palate repair has been scheduled for July 29. It's a pretty quick procedure and I think he will only be there for one night, so it's not all that bad. They saved the easiest one for last! Of course, knowing Jaxson, we'll still be there for three nights. He doesn't know how to do anything the easy way! I'm actually surprised they didn't schedule the surgery for July 3rd. He was in the hospital on Christmas and Easter, why not his birthday?
The biggest news to share, though, is that I am on medical leave from work for 6 weeks. The time finally came when I could no longer properly do my job and be the mom of a child with a disability. Jeffrey and Jaxson were both miserable, Jayson and I had no reign on our tempers, and my production at work went down the drain. I talked to the doctor who told me to take my Effexor for one more month and then I'm going back to report to him how I am doing. I'm also starting counseling on Friday to address some things that are going on with me. Thanks to Sammy and listening to/watching her deal with post-concussion syndrome, I've learned to become more in-tune with my body and understand what it's trying to tell me. I'm just glad I was able to recognize it now instead of before it was too late. I do no one any good if I don't take care of myself, so that's where I am. The break from work will be nice for everyone. And when I go back to work, I am dropping down to a part-time CSR. Jayson is going to go back to work to make up the difference, but it's clear that I cannot continue to work full-time and survive.
I'm so excited for everything that is going on with us right now. I'm taking the right steps to care for myself, Jayson gets to go back to work (which he very much wants to do), Jaxson is improving every day and Jeffrey is throwing less fits. I am also excited that both Jeffrey and Jaxson will be headed to school this fall! Help Me Grow is helping us get them both into the same Head Start school! I was so excited to hear that we would be able to do that because I wanted so badly to keep them together. Because Jaxson qualifies with his medical conditions, Jeffrey can go in as a normal peer. It means we don't have to qualify income-wise and we only have to pay $100 a month. Huge, huge, huge. Jeffrey will be so excited (and already is) to go back to school, and he's got such a caring and sensitive way about him that being around kids with disabilities will be nothing for him. He's fabulous with Jaxson and I think it will be so good for him to be in that environment until we get him into kindergarten.
Overall, things are on a positive swing for the Burks family. Jaxson is almost done with surgeries (5 in one year boggles my mind) and we're getting everything else straightened out slowly but surely. I still have bad days, but not today. Today is a good day.
"Life is not what it's supposed to be, it is the way it is. The way you cope with it is what makes the difference."
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