Kelvin Moon Loh's Reaction to Autistic Child's Outburst During Performance Needs to Go Viral

Jax and I at the park.

Normally, this blog is reserved for updates on Jaxson and other things that happen in our family. Today, though, it's going to be something different. I want the whole world to see this, so please share this and make it known that acceptance of people regardless of ability is paramount in keeping this world a safe place for our special needs community.

Yesterday, a friend of mine shared a post written by Broadway actor Kelvin Moon Loh. He's part of the cast of The King and I tour, which just ended in August. My mom and I went to see it this year when they were in Columbus, and it was a fabulous performance!

Apparently, at one of their shows in February 2016, there was an autistic child in the audience. During the whipping scene, which could make a "typical" kid cry, the child shrieked. The audience grumbled. Mom had to remove her son from the theatre in order to calm him down. This is Kelvin's response to what happened that night. Please read it, I will not copy and paste the text to here due to copyright laws. But you need to read it in order to understand the rest of this post.

I'm not familiar with most Broadway actors despite loving the art. I'm just not good with names in this case, there are far too many people involved in these productions to keep track. That said, I now have a high level of respect for Kelvin Moon Loh. He came out in DEFENSE of this mom, put into words almost exactly what that mom would have been thinking. And if you check out his Facebook page, you'll see that he is STILL talking about inclusive theatre!

Jaxson performing at Cleveland 2018

As the mother of a special needs child, his response and his efforts to make theatre inclusive really
makes me warm and fuzzy. Jaxson may not be autistic, but there are plenty of Kabuki kids who ARE autistic. And these are kids with a disorder named after Japanese theatre makeup. They love music, singing, dancing and most of them enjoy being on stage. If you've followed Jaxson at all, you know he LOVES to entertain. He will bust out in a song at any moment of the day, no matter what he's doing or who is around. When we were at the event in Cleveland, he wanted to be on stage and sing "karaoke" (I used my phone for music, he knows the words!) so I let him. And he wasn't the only one.

What people need to understand is that these kids have their own loves, their own desires and things they enjoy. We, as the human race, need to stop getting pissy because someone else's kid isn't acting the way we think they should. Or because they're disturbing a performance. Or making a scene in the grocery store. Or if they're being combative and require restraining. We, as a human race, need to understand that the kids (and sometimes adults) who act this way literally have no control over their behavior. They don't WANT to act like that, they WANT to enjoy themselves in whatever they are doing. They are PEOPLE.

I'll be honest, I didn't take Jaxson to the movie theatre until he was 5 because I was concerned about how he would do. I didn't want him to disturb other viewers, and I didn't want to have to leave because he was done and causing a scene. He's not autistic, but he has behaviors. So many special needs kids have sensory things going on, and certain things they see can trigger a negative reaction. Whether it be the whipping scene in The King and I, the bright lights at the grocery store, the sight of a needle for a blood draw, loud noises, or any other number of triggers. I never really thought of it as a fear, I thought of it as being considerate. But looking back, I see that it WAS fear. Fear of judgement, fear of things going poorly, fear of having to get in someone's face because of their reaction to my son. As I type this, I realize that some of those fears still exist. Jax doesn't have a lot of behaviors, but if it gets uncontrollable, it's extremely difficult to calm him down without removing him from the room.

So I ask you a couple of things today:

1. BE KIND! You don't know anyone esle's situation, you don't know what triggers their kids have (special needs or not), you don't know what amount of fear and anxiety they had to overcome just to show up at an event or function.

2. Be helpful, not judgmental. When you inevitably witness a meltdown or a mom struggling to calm her child down, don't judge! If you don't feel comfortable walking over and offering assistance (not all situations are good for this), just smile kindly and keep moving. Don't stare. Don't take photos or videos. Don't talk about the incident as you're walking past it. If you have kids with you, educate them on why staring isn't nice, that they wouldn't someone staring at them in the same situation.

3. SHARE KELVIN's STORY! Make his note viral. Make this blog viral. Bombard FB and Twitter with his letter. The more people who see it, the more people are likely to understand and accept.

Jax showing of his rockstar side.
He belongs on stage!!

This isn't just about acceptance, its about advocacy. Don't shame us into keeping our kids home because they might bother you. Everyone pays the same price to attend movies and performances. Don't belittle someone for trying to get their kid out of the house and enjoy some culture!

I'll tell you one thing I've learned from this: I will no longer fear people's reactions. I will no longer worry about what others think of my son if he has a meltdown or has to be removed from a room. I will not let other people dictate what my son is and is not allowed to do. He's just like any other kid, with likes and dislikes, desires and goals. My confidence in bringing him to events has increased over the last few years anyway, but now it's time to put the rest of those fears to bed.

Remember to stand up, and if you can't stand up, stand out! Be the relief that mom needs. Be understanding. Be loving. And most of all, be kind.


"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." -Unknown

When It Rains, It Pours, Part II

A couple of months ago I posted about Jaxson's heart rearing up and having to do some things with Neurosurgery. Since then, I've only been able to post on his Facebook page a few times, so I'm going to section everything out again.

Cardiology: After the 24-hour EKG, Jaxson was diagnosed with a wandering pacemaker and PVC's. A wandering pacemaker happens when the electrical signal that tells the heart to beat fires from the bottom of the atria instead of the top. PVC's are early heartbeats. While these are things to monitor, they are not putting stress on Jaxson's heart. Good news.

Urology: Jaxson's urodynamics test showed that his bladder is smaller than anticipated and it spasms early. The imaging ordered by neurosurgery did not match his bladder issues, so we are going to see them in September. We are going to discuss medication to help his bladder calm down so that he can be potty trained and not have to wear a diaper all the time. One of the side effects of these meds can be retention, meaning he won't void his bladder completely. So I will have to learn to cath him in case that ever happens. Not looking forward to that.

Neurosurgery: Jaxson was finally presented at their conference and the plan has not changed. Because imaging does not match his symptoms, they don't want to do anything yet. I'm totally fine with that. They do, however, want to monitor him closely. He will have a repeat sleep study in October, another spinal MRI and a cervical spine X-Ray done. Right now, the sleep study is scheduled after the NS appointment, but we're on the cancellation list and hopeful to get it done beforehand. Once that information is in, we'll see if anything changes.

Craniofacial: Jaxson had craniofacial clinic at the end of July. Everything looks good, except there is noticeable air leakage through his nose when he speaks. They discovered that he has a gap in the back of his throat, which is not uncommon for kids with a cleft palate or with Kabuki kids. Their solution is to have Jaxson's tonsils and adenoids removed. At least, that's the plan right now. A message was sent to ENT to have Jax come in to be assessed, but it looks like that's the direction for now.

Dermatology: I haven't posted many photos of Jax lately because he's got a nasty rash on his face. It began on May 31 and was finally diagnosed as perioroficial dermatitis by dermatology about 2 weeks ago. They put him on a 1-3 month round of antibiotics to clear it up, which of course is screwing with his Coumadin so I have to pay VERY close attention to his Vitamin K intake. Dr. Huston was nice enough to send me a list of the Vitamin K content for various foods so that I can continue making Jaxson's food. I just got that list on Friday, and I haven't had a chance to make food for him yet, so he's been on Pediasure for a couple of weeks. Drinking it, though, we're really trying not to go backwards here!

Speaking of going backwards, I just happened to think about him having surgery on his throat. I have no idea how he's going to react to eating after that. It's going to be a disaster. Maybe not, he might surprise me. This morning he told me he wanted cereal and applesauce for breakfast! We didn't have applesauce, but I made him multigrain cereal with his Pediasure so he still got what he needed AND got to eat. So it's definitely possible he could surprise me and want food, I guess I'm just not holding my breath.

I think the biggest difficulty with all of this is that Jaxson has to go in 3 days early for ANY surgery. Because his mechanical valve is the mitral valve, which is the smallest valve in the heart, cardiology will want him to come in early to be put on a heparin drip instead of bridging with lovenox shots. Honestly, I'd rather not give him the shots anyway because I hate doing it, but having a mostly healthy 6 year old in the hospital for 3 days sounds exhausting. And then there's the recovery process, which includes switching back to Coumadin from heparin. Last time we did that was right after his valve was placed, and his INR shot up to 9, which means his blood was extremely thin. It kept him in the ICU because it's so dangerous. Jean, who manages Jaxson's INR, thinks it was a dosing issue, but my sister had the same issue when she was pregnant with her daughter. Last time the INR kept Jax in the hospital an extra week, so I'm very nervous about this one. I pray Jean is right and she can control the dosing so that we don't have that issue, but it's a very real concern.

This summer has been crazy with appointments and unknowns. Right now, there's nothing I can do bu make sure Jaxson gets to his appointments so that the doctors can gather all of the information they need to make a plan. Trying not to think about the "what ifs" is hard, so I mostly try not to think about it at all, which I know is not the most healthy way to approach this. I was really hoping I could get a part-time job this fall, and it's possible that I still can once we get a plan in place, but this being in limbo is killer. We were so excited about the prospect of having additional money coming in, so hopeful that we would be able to finally get out of having to alternate which bills to pay and just be able to stay on top of things, that this is devastating.

On a final note, a petition has been started for children with rare diseases and genetic conditions. It was started by the founder of All Things Kabuki, and it is designed to get the attention of the leaders in Washington to take notice. There is only ONE Kabuki clinic in the entire US. It's in Boston. Travel arrangements are hard enough, but there are organizations out there which can help. The problem is that once you get there, no one will cover the medical part. Shouldn't our kids be allowed to visit a specialty clinic, even in another state, to ensure they are getting the proper care designed by the experts in the syndrome? There's no reason for our kids to suffer through Medicaid wanting to "exhaust all local resources" before allowing anything else to be done. It's not only a waste of everyone's time, but Medicaid is actually losing money on these kids because the specialists they are referred to aren't familiar with the syndrome, and therefore no one is comfortable making a decision because they don't want to be wrong. There are Kabuki kids who have suffered for YEARS without getting the help they need because we can't afford to take them where they deserve to go. Please, this doesn't cost you a thing, just a moment of your time. Please sign this petition so all children with rare and genetic conditions can get the care they so desperately need and deserve!

https://petitions.whitehouse.gov/petition/rare-disease-and-medically-complex-children-need-access-quality-specialty-clinics

As always, thank you for your continued prayers and support! I know very well how much more difficult this would be if we didn't have those things.

~"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." -unknown

When It Rains, It Pours

I decided to write a blog today to give a good update on Jaxson. May was such a busy month, I think we had a total of two week days without an appointment or event of some kind, and many days had more than one item on the agenda. I will admit, though, that through May, there wasn't much to update you on. Jax was doing great, eating well, doing fabulous in school and just being his normal, happy self. The only thing that changed in May was that Jax started changing colors almost daily. He would alternate between turning purple/blue around his lips to losing all of his color completely and his skin would be clammy even in the 80 degree sun. Which brings me to my first update:

Cardiology. Jaxson was originally scheduled for his heart echo on 7/20, but because of the symptoms he was presenting, I called and they requested he come in the next day. That always puts me on high alert, when they want to see him so soon and squeeze him into the schedule. The good news that came from this appointment is that his valve looks great! His gradient is down from his last echo, and based on his other previous results, the hope is that his last gradient (14) is a one-off since his current gradient is 8. A number of things could have caused it to appear higher than it was. So no valve replacement yet, which is a relief! But it also means we had no explanation for the color changes and such, so they told me to take his temperature when it happens and see if he's running a fever. Jax doesn't typically run a fever unless he's really sick, so I'm not anticipating that changing. Still, I'll do what they tell me haha. The second portion of the appointment did not go so well. Jaxson has some irregularities on his EKG. First, he has two superior vena cava's, the part of the heart where de-oxygenated blood flows in to the atria. This is not a defect, it is considered a normal variant, but I was unaware of it until last week. Second, he has a premature ventricular contraction (PVC), which is basically an extra heartbeat. Because he hasn't had this before, I'm not sure what it means. My sister and my grandfather both have this as well, it was benign for them. I'm just not sure if it's something that would have always been present or if it can show up at any time, so I will mention it to the doctor the next time we talk. Third, Jaxson has irregular P-waves. That's the first little bump on the EKG before the tall one. Sometimes that little bump goes up like it's supposed to and sometimes it goes down, but it's inconsistent. So we left cardiology on Friday with a 24-hour EKG monitor which I sent back this week. This should clarify some things for them and I will get a call in a couple of weeks with the results. Honestly, I can't even do research on it at this point. The heart is incredibly complicated, and researching any irregularities can be depressing and scary. I plan to wait until they call me with the results before I do any crazy research, but I do know that this could be something within the chamber. What that means, I don't know yet. I'm trying not to spend too much time considering what it could mean. Looking at his overall EKG, I can see a lot of differences between his beats and I get the feeling that something is going on, I just don't know what. And it's possible that I'm wrong, maybe all of this is benign and Jaxson just wants to make me go gray at an early age!

Sleep Study: Jaxson had a neurosurgery appointment on Monday, which I'll get to next, but first I wanted to go over this part. I had them print out his sleep study for me since complex care never called me with the results. Jaxson has reduced sleep efficiency and snores about 85% of the night. He also had 7 episodes of central sleep apnea. It sounds scary, but his oxygen saturation never dipped below 90% during the episodes, so right now we are just monitoring it. If that would change, it's possible he would require a CPAP machine, which I imagine will make getting him to sleep more difficult.

Neurosurgery: Because of the sleep apnea, the fact that he hasn't had imaging in 2 years, he's been tripping and falling a lot more lately and his extreme sensitivity to small things, we are doing a sedated full brain and spine MRI. It is not scheduled yet, but it should happen in the next month. They'll look at his Chiari to see if it has changed as that could be the cause of his sleep apnea as well as balance problems. He's having a urodynamics study on 7/2 which will tell us more about his bladder function and control since we're having so much trouble getting him potty trained. We want to make sure we aren't fighting an uphill battle with incontinence, and if he is incontinent, it could be related to his tethered cord. Thankfully, since it's just sedation and no risk of bleeding, I won't have to bridge his Coumadin with Lovenox for the procedure.

Best for last, Make-A-Wish: I got word last week that Jaxson was approved for Make-A-Wish! I am beyond excited and elated at the prospect of Jax getting to have whatever he wants. Right now, it's a toss-up if he's going to pick something Shinedown related or WWE related! We will have a Wish Discovery Meeting this fall to sign the necessary paperwork and that's when Jax will tell them what he wants. We'll be working on honing it down until then!

I think that's all for now, and I think that's definitely enough. It's so hard to tell the doctors everything that I think is going on with him when most of the time he is a pretty typical almost-6 year old. He loves to be outside and play with other kids, he constantly bangs on anything he can like he's playing the drums and now says he wants to learn to play the guitar and take singing lessons! If you saw him on the street, you'd totally call me crazy for thinking there's anything at all going on with this kid, but I guess that's why I'm his mom. I know him better than anyone, and even if the MRI shows nothing and the EKG comes back with nothing, I'll know I did the right thing because it COULD be something. I told my family, if something is going to go wrong, can't it be something we already know about? All of this new stuff with his heart is killing me. I had a feeling he'd have to have more spine surgery as he grew, but I was beginning to be hopeful that I was wrong. I still could be, and I pray that everything comes back clear, but this is Jaxson we're talking about! We've gone 30 months without him being cut open, a streak I'd like to continue. It will be a few weeks before I have the results of any of his tests, so please be patient as I am waiting too. And please, please pray.

With that, I'm done. I want to thank each and every one of you, especially if you made it this far, for being such an amazing support system for our family. We truly could not do this without the love and support of all of our family, friends, and strangers across the globe who consistently pull for our boy. We love you! <3

"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." ~Anonymous

When Did Life Get So Busy?

It's been a little over a month since my last blog post for Jaxson. Normally, it doesn't bother me because a lot of his updates go on his Facebook page. But I think it's been a week or more since I even posted there! It's not for lack of things to post, either, there's plenty of Jaxson updates. But suddenly, life has gotten VERY busy! So, here's what you've been missing :)

If you didn't see the heart update from January, Jaxson's gradient on his mitral valve is at 13. Severe is at 10, so he's already past that. However, because he's asymptomatic, nothing is being scheduled at this time. I kindly wrote to his cardiologist to remind her that when we initially found Jaxson's mitral stenosis, he wasn't having symptoms. We only found it because he was re-admitted 2 days after he was discharged with pneumonia and couldn't kick it, which is when I requested an echo. Jaxson is so pale, color changes are not the best indicator of his heart unless he turns seriously blue. He's never done that, except in extreme cases of illness, so I have to look at other things. Does he get short of breath when he exercises or plays? Sometimes, but it's minimal. He sweats like a grown man, but apparently no one thinks it's due to something in their respective specialty. So, for now, we are scheduled to go back in July for another echo to see where he is.

Earlier in February, Jaxson saw complex care and the sleep doctor. He's in the 10th percentile for weight, but still way down on the height chart. From when we saw the sleep doctor in June until February, he grew 2 inches and gained 10 pounds! This, I believe, is largely in part to the feeding therapy we've added. Most days he gets extra calories, unless I can get him to take enough food to eliminate a bottle of Pediasure. So this is good news! I don't expect him to hit the charts for height, maybe ever, but that he's growing so much is definitely a positive sign! According to the sleep doctor, Jaxson's ferritin levels are still well below where they need to be. In June, he was at a 10. In January he was at 19. They want him at 50 or more! But I discovered that he isn't supposed to get his iron supplement with milk products, which I didn't know before, so I've adjusted when I give it to him. Since he's eating more by mouth, I just make sure he has a meal without any milk products and that's when he gets it. I'm hopeful we will see a bigger improvement in April/May when we recheck it.

Speaking of eating, holy cow! We have been uber-busy the last few weeks so getting meals in has been difficult, but we make it happen at least once a day. He's taking 4 ounces of puree and 2 ounces of Pediasure per sitting! If he doesn't get the Pediasure, he will take 5-6 ounces of puree. You guys, he is absolutely killing it! He still struggles with mixed textures, and if he takes too big of a bite of something more solid than a puree, he will throw up. So I'm pretty sure there's some very weak swallowing muscles and the coordination between chewing and swallowing can be hard for him. It's so interesting to do this with him, because for most of us, eating is like breathing. It's just something we know how to do and we don't think about all of the things that go into actually taking a bite. Jaw muscles need to work, your tongue is a muscle that requires a ton of coordination, and there are muscles along your throat and esophagus that have to work as well. There are a lot of moving parts to coordinate, and when you've been tube-fed your whole life plus have hypotonia (low muscle tone), eating is a big challenge. Seeing the progress he's made in just a few short months has been nothing short of amazing and I couldn't be more proud of how much he has accomplished! It gives me hope that one day he will be able to take all of his nutrition by mouth. Even if we leave the tube for meds, I don't care. As long as he's eating! I will say, though, that he does still prefer his tube. So while he's made a ton of progress, there is still a long way to go before it's gone.

Also in February, Jaxson saw audiology and the dentist. All good news at both appointments! Jaxson actually hears better than we initially thought, and this is something that's relatively normal for his age. He can actually participate in the games they play to test his hearing, which makes it so much easier for the audiologist to determine where he is. He can hear 2 out of the 4 frequencies in his right ear, so we've opted to trial that ear WITHOUT a hearing aid! He still needs the one for his left ear, and his hearing loss is sensorineural so it will never get better, but if he can get by with one then we'll take it! We can always add it back if we think he's not doing well enough, but the idea is to not damage what he CAN hear by using a hearing aid. So far, so good! At dental, Jaxson was a MODEL patient! I was in complete shock, I thought for sure I'd have to sit right next to him and hold his hands down. But the hygenist was fantastic, letting Jaxson feel everything on his hands before she put anything in his mouth. And even when he gagged (as he does every time I brush his teeth), he stayed put and didn't fight her. I attribute a lot of that to feeding therapy, because he gags a lot and we just keep going because he has to learn that that isn't a good reason to stop eating. Even if he throws up from gagging, I usually get him to eat at least a few more bites so he knows that he still has to do it. Anyway, he literally laid on the bed by himself while I sat on a chair a few feet away. No crying, no complaining, no biting, no nothing! And at the same time, Jeffrey went to have the seals on his teeth checked, but he had to go alone because I needed to stay with Jax. Jeffrey was amazing as well! He went, all by himself (a huge feat for him), with the dentist and was back before Jax was done. I was a super-proud mom that day!

This morning, Jax had PT and this afternoon he has OT followed by picking up Jeffrey and taking him to an appointment at 4. We got Jax set back up for bi-weekly OT, so no more flex scheduling thank goodness! Now, for school, Jax goes Monday, Wednesday and Thursday afternoons and every other Tuesday afternoon. I hope to add Friday next month to help him get prepared for going all day, every day next year.

Besides appointments, I've been running around to my own appointments, plus chaperoning events with Jeffrey's school and doing some freelance work for clients at home. When I'm home, that is! Last week, aside from Friday, I think I was home for maybe 5 hours in total during the day. It's just been crazy! Over the weekend, Jeffrey had a basketball tournament and Jaxson had the Conquer The Runway Heart Hero Fashion Show, which was so fun and the kids were all so cute! I will make an album on FB and post the video of Jaxson strutting his stuff. It was a really busy weekend, but fun!

I think that's it for now! OT this afternoon at 2, feeding therapy and INR check tomorrow, speech on Thursday and this weekend we are going out of town to visit family. At some point, I am sure I will have five minutes to sit down, but if not, I hope you all have a fabulous week! We are going to enjoy this warm up while it lasts, because we're in Ohio where the weather is schizophrenic and it can snow in April. But 70 degrees in February? We'll take it!

As always, thank you for taking the time to read this and follow Jaxson's journey with Kabuki syndrome. It's a never-ending battle with one thing or another, but it was so nice to write a positive blog about Jaxson. Have a blessed day!

Jaxson's First "Normal" Holiday Season

Hello friends and family! It has been some time since I updated Facebook with what has been going on with Jaxson, and for that I apologize! Because there is a bit to update, I decided a blog would serve better than a super-long FB post. So here goes!

This holiday season held a few firsts for Jaxson! The first thing to tell you about is that Jaxson got to leave the house to see Santa this year! At 5.5, Jaxson has been too sick in previous years to take him out of the house. This year, with the recognition of his compromised immune system, Jax got a beastier pneumonia vaccine. The Pneumovax shot gave Jaxson nearly a four-fold increase on his pneumonia titers, meaning he has antibodies to help fight those viruses. He also got a boost from his flu shot for influenza A, and actually has flu antibodies this year! So we felt comfortable taking him out in public, and both boys had such fun! We went to a local mall that's likely on it's way to closing, and there were very few people there so we only had to wait for one customer before it was our turn. The boys talked with Santa and the photographer snapped pictures for about 10 minutes. We got 12 shots in all, but here are a few of my favorites!

    

The following Monday is when the boys got to go to Nationwide Children's to meet some of the Ohio State Buckeyes football players along with coach Meyer. That was a blast, I've never seen Jeffrey so excited for something! They had a blast there as well.

Christmas was amazing this year! We had some elves send some things, and after we opened gifts at home, we went to my parents for lunch and more gifts. It was a really nice day, no one argued much and we were able to relax and enjoy the day.

Then the weather kicked in. Cold wind chills, down to -25 at times, followed by a warm up with snowfall. Then it warmed up and melted, and now we've got another 6" on the ground here in Ohio. Another first for Jaxson came, because he's been so stable and done so well, Jaxson got to go outside and play in the snow for the first time ever! He wasn't too interested in touching it or getting down in the snow to play, but he totally enjoyed running around outside with his brother. Jeffrey likes to make snowballs and throw them at the tree, which Jaxson got a huge kick out of. It only lasted about 20 minutes because it was still pretty cold that day, but that he was able to even get out there is a huge blessing!

This last bit of information is fresh. Jaxson had an IEP review last week, and he's made so much progress in PT and speech that they almost discontinued his school therapies! They didn't because they want him to continue to build his foundation for kindergarten next year, but his time for both has been decreased. This speaks volumes to the amount of progress Jaxson has made over the last year! He's meeting PT and speech goals left and right. He is even meeting goals in OT, but that's his biggest delay so that's not going anywhere soon. But I am so pleased with the progress he has made, and we set everything up for him to stay at the same school next year. They have a few KG rooms, and they do everything on an inclusion basis. So Jaxson will spend most of his time in a regular classroom, but when they split into their stations, he can be pulled for therapies. I can't wait, I know he's going to do great!

Final piece of info is that Jax had his heart echo yesterday. His gradient rose from 10 to 13, and while I anticipated them telling us it was time for surgery, they aren't doing it yet. I'm not sure how comfortable I am with waiting 6 months for another echo, but if he only rose 3 points on the scale in this 6 months, then it should be similar over the next 6 months as long as his growth rate remains the same. We are watching him closely because he likes to lose his color and he's been complaining of being tired a lot, but it's also not stopping him from doing anything. Dr. Bowman says she doesn't think the fatigue is due to his heart, so I'll bring it up at the sleep clinic next month, and if no answers there then it will be a call to neurosurgery for head scans. But not jumping ahead too fast, right now Jaxson is happy and healthy, and that's how we like it!

So that's the update for Jax! Jeffrey has been going to behavioral health for the last couple of months to address his ADHD issues, plus he was diagnosed with generalized anxiety which didn't surprise me a bit. He's doing so well in school this year and he really likes his therapist, so I'm hopeful that he will get a handle on things and learn some coping skills. He also started playing basketball with the Junior Cavs League, which was nice enough to allow him to join even though the season already started. He had his first games on Sunday, where he didn't play much but enjoyed meeting his team, and his first practice is this Friday.

Meanwhile, I've started a freelancing business utilizing my 15 years of experience to assist businesses with web content, social media accounts and posting, and SEO management to boost traffic and increase sales. Plus I'm working on rebuilding the All Things Kabuki website with our new host, and I have high hopes that it will be far better than it was before!

Jayson is by far the rock that keeps this family together. He quietly goes to work every day, busts his butt to get his job done, then comes home and helps out around the house and plays with the boys. He works on our vehicles himself, fixes every little thing that goes wrong in this house, and really helps me stay on top of what needs done. He's a little cranky that he had to get glasses this year, but he's getting used to it and when he has them on, he no longer looks like he's 15 haha!

Overall, things at the Burks household are going well. There's always struggle, especially when mom (me) slides into depression or has anxiety rising up, but overall we're all doing well! I couldn't be happier to report such amazing things in our lives.

~"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." (Anonymous)