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."

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."

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."

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."

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.

Jaxson/Jeffrey Update Mix

I cannot believe it's been almost two months since my last post. It just goes to show how busy we have been and how tired we still are. I still plan on doing a recap of the second part of 2012, but not tonight. Tonight I have too many other things on my mind. Some of this will be vague, and for that I apologize, but there is really no way around it.

Jaxson will be 9 months old in less than two weeks. I can't believe it. Sometimes I forget how old he really is because his development is so far behind. Although his therapists and doctors are extremely happy with his progress. He has exceeded all of the goals they have set for him and they've had to come up with new plans earlier than expected. Which is great news as far as learning what his eventual cognitive ability will be. He has the ability to learn, and he has the desire to try. He's not sitting up 100% yet, but he's close. He loves to spend time rolling around on the floor and attempting to crawl. He does this adorable thing where he rocks back and forth for a little while and then throws his arms and legs out in an attempt to move forward. He generally moves an inch or so and gets so mad when he can't move farther! He's got some thick-headed stubborn genes in him from both sides, so I have no doubt that he'll figure it out soon. His feet are continually flexed at a right angle still and it's starting to worry me. He hates having his feet pointed down, no matter how much we stretch his ankles and legs. And he prefers to stand over sit. If he's in his jumper or his exersaucer he can stand without holding on to anything. I honestly think he'd have a better shot at walking over crawling, but it's good for them to learn both so we are encouraging it. Oh and he's starting to babble a little! He tries to say mama but he can't string together two syllables yet, so it comes out "Ma". And his laugh is the most adorable thing on the planet! Sometimes it's hard to make him laugh, even though he splits his face open with a grin, but if you can get him going it's hysterical. I can't help but laugh with him, especially because what he thinks is funny is always the oddest thing! He loves to be played with and all of his toys go straight to his mouth. I'm sure he's got a tooth cutting, it will be number 2! He cut his bottom left front tooth a few weeks ago and I'm positive that another one is about to break through. We started solids and are trying to push them as much as we can because they want him off of formula by the time he's a year old. I have no idea how that's going to happen. These dieticians should try to feed him! OT helps, but you can only do so much before a child has to help. But they said we could start a sippy cup now too, so maybe if we get him in the habit of bringing his hands to his mouth and something going in there then he'll be more amenable.

On the medical side, Jaxson had his tubes put in in January. He has his spinal surgery next Friday and will be in the hospital for 2 days. He has a sleep study this weekend (I'll get to that) and they should be doing a follow up ABR (hearing test) when they do the spine surgery next week. The cleft repair will take place most likely in July. He has a vision screening in May (finally) and they are keeping an eye on his head because it's not growing as much as they think it should. They told us when they did his skull surgery that there was a chance they'd have to repeat the surgery, so we knew this could happen. It's just hard to know what they are looking for. I think his head should be growing at each appointment because Jeffrey's did, but Jeffrey didn't have nearly as many appointments as Jaxson has so I have no idea. Jaxson also has a follow up with Urology in about three weeks for them to check his kidney and make sure everything is okay with it.

Now for the sleep study. I've done a ton of research on how much a baby is supposed to sleep. Of course, all babies are different, but there's a general rule of thumb for most ages. At Jaxson's age, most babies sleep about 14 hours in a 24 hour period and 5 or more hours at a stretch. I took Jaxson to the doctor last week specifically to address his lack of sleep. Our concern was not for us, although it is very wearing, but that Jaxson wasn't getting enough sleep overall. After going through his daily routine with the doctor, I was told that Jaxson sleeps about 4.5 hours in a 24 hour period. We're lucky if he sleeps longer than 2 hours at night. It's awful. I'm tired. I can't drop this pregnancy weight. Jayson is tired. Jaxson is tired, but he's generally a happy baby and Jeffrey is just Jeffrey. You would never know that anything bothered Jaxson, though. He's such a happy boy and always smiling. He is kind of needy in how much attention he demands, but when it comes to that smile I think we'd do anything.

The problem with that is the affect it has on Jeffrey. Honestly, I think that Jayson and I do a fantastic job of making sure that Jeffrey is entertained. It will be easier when the weather warms up so he can play outside, but for now we make sure that we play with him and give him attention. But for whatever reason, Jeffrey just can't handle when someone has Jaxson. He wants to be right up in our business, sometimes he helps and we let him, but sometimes he's trying to get us to do something and it's clear we cannot. He's started backtalking and ignoring things we tell him. None of that goes unpunished, but I hate yelling at him. He's such an adorable little boy and he is literally the light in my eyes. The highlight of my day is walking through the door and hearing him running through the house screaming, "Mommy! Mommy you're home!" And throwing his arms around my legs before I can take 2 steps. Between him and Buckeye it's a job to get my coat off when I get home, and I wouldn't change it for anything. I do worry about Jeffrey. He needs socialization and he needs education. He's the smartest 4 year old I've ever seen and I want to encourage that and build on it. And he has this way of reminding you that everything is going to be okay. Sometimes he has days where he just chills out and sits with you and randomly says, "I love you" all day long. And it's the sweetest, most heart-warming thing on the planet. I just want to squeeze him! He's getting so big so fast and I feel like I'm missing it. He does something new every day, says a new word or learns how to do something by himself. So when he has nights like tonight (he peed on the floor in his bedroom on purpose, but I did not catch him), I just don't understand. I know he's 4 and he's going to have good days and bad days, but it makes me feel like I'm doing something wrong. So wrong that Jeffrey feels the need to act out just to get my attention. And I don't know how to fix it.

Well, I guess it's not something that will be fixed any time soon anyway. I have so much going on outside of work that I barely have time to think, let alone adjust any of my actions to accommodate a 4 year old who is throwing a fit because I won't let him have any more juice. Once some of this alleviates (hopefully in a few short months) then he'll get all the attention he can handle and then some. This is the vague part :) There are some big things coming up for the Burks family and I cannot wait until it's all completed. We are very close to achieving a huge goal and then things are going to be a little bit easier for us. I can't wait!

And now I have to go feed Jaxson. He got a little off-schedule today because Jayson had to drop me off and pick me up from work, so we pushed his dinner back. I hope I can make it through his feed without falling over. And I hope Jaxson makes it through without waking up! Fun at COSI with my niece tomorrow, so sleep would be preferable!

2012 Recap: Part 1

It’s been way too long since my last post. I cannot believe that I didn’t post after Jaxson’s surgery in November, and life has been crazy since then with the holidays. So this is long overdue, and this will probably be a long one.

On my way to work this morning, I reflected on everything that has happened over the last 12 months. 2012 was a tough year for my entire family, and looking back I can’t figure out how we made it out alive. So let’s recap:

Sometime in January or February, I got the results of my quad screening. Jaxson was high risk for Trisomy 18, a syndrome that typically results in the death of a baby in their first year of life. After deliberating with Jayson and talking with the doctors, I opted to not do an amniocentesis or a blood test for further confirmation. No one saw anything on the ultrasound that showed he might have the syndrome, the blood test was really expensive, and I didn’t want to take a risk with an amnio only to find out that he was fine. I was going to love this baby for as long as he’d let me, no matter what the outcome was.

During those ultrasounds and discussions, it was discovered that Jaxson would likely have a heart defect. So sometime in March, a specialist from Children’s was brought in to review an ECG. While we were thinking that Jaxson wasn’t going to have Trisomy 18, now we were faced with the possibility of him being born with Hypoplastic Left Heart Syndrome. The defect requires three heart surgeries by the time a child is 3, the first surgery taking place in the first week of life. Arrangements began to be made to have Jaxson transported directly to Nationwide Children’s the day he was born so that he could be monitored in the NICU by specialists and neonatologists.

At an ultrasound in April/May, Jaxson was measuring small. I wasn’t surprised, neither Jayson nor I are big people and Jeffrey was a small baby too. But given everything we had already gone through, the doctors decided that I should undergo weekly growth checks and have non-stress tests twice a week to monitor Jaxson’s growth and his heart. I didn’t worry about the growth checks, but on the days when I had non-stress tests, it was tough. Some of those days the appointment went fast because Jaxson cooperated and gave the doctors what they wanted to see. On other days the test would take an hour or two because they would have to give him a jolt (place an instrument on my belly that vibrated) to wake him up and make his heart rate go up. Those were the days I got worried. But the doctors weren’t concerned as long as the heart rate did come up and stayed up for so many seconds before dropping back down.

Then came the hardest week of my life. Jaxson decided that he wanted to come early. On July 1st, I went to the hospital with contractions. I wasn’t dilated far, but the staff at Riverside determined that I was in labor at just under 37 weeks. The problem? There were no NICU beds anywhere in Columbus. If they couldn’t stop my labor, they were going to have to transport me to Cincinnati or Cleveland to have my baby because having Jaxson travel after birth was not an option. And Riverside stated that they were “not equipped to deal with a baby like Jaxson.” How reassuring. Thankfully, with the help of a drug used to stop labor combined with a tad bit of dilauded, my labor was stopped. I decided to stay home from work for the next two days because the contractions never really stopped. They just slowed down. So on July 4th when my contractions ramped back up, I took my time getting to the hospital. I wasn’t convinced I was back in labor because my contractions never stopped. At least, I wasn’t convinced until we dropped Jeffrey off at my parent’s house and I was curled up in a ball on the floor. These contractions were WAY worse than anything I experienced in the 36 hours I was in labor with Jeffrey. So we ended up back at Riverside and lo and behold I was 3-4 inches dilated. I have never seen a bunch of doctors and nurses move as fast as these people did. I got to the hospital around 1:30pm. Jaxson was born at 3:51pm.

I will never forget that day for the rest of my life. Of course, I will never forget the day Jeffrey was born either. He just HAD to come during a Steelers game. Guess it was inevitable that he would be daddy’s boy and a Steelers fan! But as I lay on the operating table, I was so nervous about how the spinal was going to affect me and what the neonatologist was going to tell me about Jaxson. When they pulled him out, it took way too long (in my authoritative mommy opinion) to hear Jaxson’s first cry. It was probably five seconds, but it felt like five minutes. I breathed a small sigh of relief. Jaxson was whisked to the other side of the room to be examined. Jayson sat by my head and held my hand as the doctor came over. They started the medication for his heart. His lungs were clear. The back of his head is flat. He has a hole in the roof of his mouth. He has low muscle tone. He was very matter-of-fact. I was stuck where I was, so I told Jayson to go see him. Tears rolled down my cheeks and the anesthesiologists nurse wiped them off with a tissue and patted my arm. She was so sweet. Jayson didn’t get any pictures because there was so much going on. Jaxson was taken to Riverside’s NICU until transport from Children’s came to pick him up. I was taken to recovery and wasn’t allowed in a room until I could move my legs. I remember fighting through the drugs, trying to get my body moving as fast as possible. My family came to see me and Jayson kept me company. It was only 45 minutes before I could move and they let me go to my room. The nurses were pretty surprised I got through it that fast. I just wanted to see my baby. I hadn’t seen him yet. Family and friends came up to my room to wait with me and about an hour later the transport team from Children’s showed up with Jaxson in an incubator. They pulled the side down so I could hold his hand, kiss his cheeks and stroke his head. I was not allowed to hold him. I only got about five minutes before they took him away.

I spent that day and the next day at Riverside recovering from surgery. After my second night, the doctor’s cleared me to leave. It’s the fastest they let anyone out who’s had a C-Section and the doctors knew my situation. They knew I had been moving around without a problem, forcing myself through everything to get out of there. They did everything they could to help me get out as fast as possible. I hadn’t seen Jayson since the day before because I wanted him at the hospital. Jeffrey had been with my parents, and I hadn’t seen him in 2 days either. My second mom, Mary, was nice enough to drive me from the hospital to Children’s so I could see Jaxson. My mom, Jayson and my best friend, Amanda were waiting for me. When I got there, I received the best news: I was allowed to hold him. No one had been allowed to hold him yet, but they let me.

I held Jaxson as long as I could. Jayson had gone to get food and everyone else had left us alone. Then it seemed that everything hit me all at once. I got nauseous. I had to get out of there. I didn’t want to leave Jaxson, but I knew he was in good hands. And there was a little boy at home who needed his mommy. So Jayson took me home where I ended up sick, but then Jeffrey cuddled in bed with me and we watched a movie. The next morning I felt more like myself and we started a routine of me going to the hospital in the morning for a few hours to talk with the doctors and come home in the afternoon to spend time with Jeffrey. Jayson would go early in the morning or late at night, whatever fit his schedule.

Somewhere along the lines (I’m not entirely sure when), it was communicated to us everything that was going on with Jaxson. I couldn’t deal with it early on, or maybe I just didn’t want to because I knew nothing was happening right away. We had to get through that first weekend. They took Jaxson off of the heart medication to see how he would do. He came through with flying colors, which meant no heart surgery. I still had a hard time going to see him with all of the wires, IVs and monitors around him. Not to mention the trip up to his bed. I was in a wheelchair for awhile before I could actually walk that far, so I couldn’t go by myself. Jayson was so amazing during those first couple of weeks until I could walk. He would take me there, wheel me up to Jaxson’s bed, and then go home to hang out with Jeffrey. Then he would pick me up or one of my parents would come to see the baby and take me home.

Since I started this yesterday and I have only gotten through half of the year, I’m going to stop for now. Look for part two of the 2012 recap tonight or later this week.