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!
Tuesday, February 20, 2018
Wednesday, January 17, 2018
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)
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)
Monday, October 23, 2017
10/23/17: Kabuki Syndrome Awareness Day
Today is world wide Kabuki Syndrome Awareness Day! I know my Facebook and Instagram feeds have been green all month for Kabuki syndrome, but today I know I will see even more! Seeing everyone wearing green and supporting this rare disease warms my heart at the love and support we have in our community. A lot of people take the day to share their story with Kabuki, and I figured, why not? So, brace yourselves, Jaxson's story is complex, but worth reading every word!
When I was pregnant with Jaxson, there were early signs that there could be a problem. His quad screen came back at high risk for Trisomy 18, which would have been a fatal diagnosis. Extra ultrasounds were ordered, but there were no physical signs of T18 other than a heart defect that may or may not be related. We discovered this at 18 weeks, and I was told that if we wanted to terminate, I had until 20 weeks in Ohio. That was never an option. We didn't do an amniocentesis because I was concerned about our already fragile baby, and the new blood test they have wasn't covered by insurance, so we opted to wait and see. Later in the pregnancy, Jaxson wasn't growing. Or so they thought because his head was measuring small, and he wasn't moving around as much as Jeffrey had. Non-stress tests were done three times a week for the last 4 weeks of my pregnancy, until Jaxson decided he wanted to come early. That was a nightmare since we already knew he needed to go straight to the NICU at Nationwide Children's, and there were literally zero NICU beds anywhere in the city. If they couldn't stop me on 7/1/12, I would have been transported to Cincinnati to deliver. Thankfully, the labor was slowed down enough to be considered stopped and I was sent home. Three days later, we were back. This time I was already 4cm dilated and there was no stopping him. I arrived at the hospital at 1:30pm and Jaxson was delivered by C-section at 3:51pm on 7/4/12. I have never seen a hospital move so fast, at least not at that point.
They didn't raise Jaxson over the sheet for me to see him, but took him straight to the table for a once over. It felt like FOREVER before I finally heard his little cry. I sent my husband over to see him, even though he didn't want to leave my side. The neonatologist did exactly as I instructed him when we met the week before, he gave me the facts. As he told me the few things he saw off the bat, I just nodded with tears streaming down my face. I couldn't move from the drugs, so one of the nurses wiped my tears. My husband returned, but when I went to recovery, I instructed him to see to our family that was waiting. I still hadn't seen my baby. When I finally got back to my room, everyone was waiting. When they brought Jaxson by before he was transported, he was in an incubator and I was not allowed to hold him. I was so numb, I barely touched him. They gave me photos and took him away. I sent Jayson and my dad right behind them. I was stuck at the hospital for 2 days, dying inside knowing that no one was holding him, no one could comfort him the way I could. I was allowed to leave a day early because it was my second c-section and I proved that I was ready by moving around. They weren't going to keep me there any longer! My best friend's mom stayed with me and drove me straight to Jaxson. I still hadn't been home, hell, I hadn't seen Jeffrey in 2 days either.
If you've ever been in a NICU, you know how overwhelming it is to walk into the open bay. Machines beeping everywhere, lines in veins, lines in arteries, stickers on the heads and chests of babies, cannulas and respiratory devices, NG tubes and feeding pumps. Syringes, isolation clothing, incubators, tiny little babies literally on life support. It's definitely a shock to try and take it in, but the only thing I remember from that first visit is being able to see my baby, and then being told that I could hold him. They did not let anyone else pick him up until I could! The nurse helped me adjust all of the wires and I just sat there with him for hours. Until I had to leave, I did have another child after all. Jayson and I took turns going to see Jaxson over the next 6 weeks. We learned all of the things they found that would cause him problems in the future, including that he would need several major surgeries. We were hooked up with social workers who were amazing in handing over resources and helping us get things ready for home. But those first six weeks, those were so hard on everyone.
Fast forward a bit, Jaxson has regular PT, OT and speech therapies, regular specialist visits and has undergone 9 surgeries. He's 2.5 now, and after years of research and tests and countless doctors shrugging their shoulders, Jaxson received his diagnosis of Kabuki Syndrome. Excuse me, what was that? No, the doctor didn't sneeze. Kabuki syndrome is a rare genetic disorder, he did not inherit it from us, but it was a new mutation in his genes. At this moment, we should have been sent to immunology given the issues Kabuki can cause, but we weren't. And I didn't have time to even figure out that we needed to go, because around this same time, Jaxson contracted aspiration pneumonia after a routine MRI. Upon admission, one of the drs recommended that we get a heart echo because he hadn't had one for awhile, but it was the weekend and we figured we could do it outpatient. Two days after discharge, we were right back, the pneumonia wasn't going away. I requested the echo and that is when the extent of Jaxson's heart issue was discovered. He had severe mitral stenosis, so bad that they scheduled and did the surgery in 3 months. It almost didn't happen then because he had such a hard time fighting the pneumonia and it could have been dangerous, but I convinced the doctors (by threatening to take him elsewhere) to get it done. His first open heart surgery was in June 2015. We were told after the surgery that he would need a mechanical valve, but the doctor was hoping to give him more time to grow first. But Jaxson, as usual, had other ideas, and by September his numbers were back up. In December 2015, a cath was attempted, but caused a severe leak (which we knew was a risk), leading to emergency open-heart surgery the following day to have the mechanical valve placed. That surgery was at least seven agonizing hours, but I knew they had to be careful because Jaxson had coded in the CTICU twice that morning. Finally, the surgeon came out and let us know it was a success. Jaxson would be kept sedated and paralyzed for awhile to let his body recover, and he spent three weeks in the hospital that time. He made it home three days before Christmas.
It's been almost two years since then, and Jaxson has managed to mostly stay away from the hospital. Last year, though, he had the flue twice, RSV and pneumonia in a six month span, causing me to seek out an immunologist. Since we hadn't seen one yet, I opted to see a doctor in Cincinnati who specializes in Kabuki. Earlier this year, we learned that Jaxson indeed has a compromised immune system. He does not make any antibodies for the flu, so the flu shot is essential for his winter survival, and he only makes antibodies for 4 of the pneumonia viruses. He received the stronger pneumonia vaccine almost 2 weeks ago and we will have his numbers re-checked when we visit the doctor next month. But for now, Jaxson is seeing his regular therapists and specialists, and there are no surgeries planned. The last two years have seen Jaxson grow, and I mean actually grow to where he needs new clothes for once! The years have improved his speech one hundredfold, his fine and gross motor skills are catching up and he has emerged with his own vibrant personality that infects everyone he meets! He's happy, he loves life and he is a true joy. I would not change him or anything about him!
Some of you haven't followed Jaxson from the beginning, so I want to lay out his surgeries for you:
Feeding tube placement at 5 weeks
Craniovault Reconstruction (skull) at 4 months
Ear tubes placed
Tethered cord release at 8 months
Distraction surgery 1 (skull) 15 months
Distraction surgery 2 at 18 months
Cleft palate repair at 18 months (surgeries were not at the same time)
Ear tubes placed
Endoscopic Third Ventriculostomy (brain surgery) at 25 months
Open heart surgery at 35 months
Heart cath at 29 months
Mechanical Valve placement at 29 months
Keep in mind, that in between all of these, Jaxson likely spent some time inpatient with some sort of virus or illness. Until his heart was fixed, he couldn't fight anything. Now, while he still has a compromised immune system, he is bigger and has been able to fight off colds with a little extra help from breathing treatments. But if that's what it takes to keep him healthy, then that's exactly what we will do!
Kabuki Syndrome is not a fatal diagnosis, but there are issues it causes that can lead to a premature death. So far, Jaxson is living life as a happy 5 year old and I believe that he will continue to do so for a long time! We don't let possibilities dictate us or dictate what Jaxson is and isn't allowed to do. Sure, we have to be careful, he's going to be on a blood thinner for the rest of his life, but that doesn't mean that life stops or that we have to keep him in a bubble. No, he's a five year old boy who loves to play and be silly and dance and jump and run around like a chicken. He's so perfect, I couldn't imagine trying to keep him bottled up away from the rest of the world! The world needs his smile, it needs his laughter and it needs him to remind us that life is too short. Time to enjoy it while we can!
~"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 different." -Unknown
When I was pregnant with Jaxson, there were early signs that there could be a problem. His quad screen came back at high risk for Trisomy 18, which would have been a fatal diagnosis. Extra ultrasounds were ordered, but there were no physical signs of T18 other than a heart defect that may or may not be related. We discovered this at 18 weeks, and I was told that if we wanted to terminate, I had until 20 weeks in Ohio. That was never an option. We didn't do an amniocentesis because I was concerned about our already fragile baby, and the new blood test they have wasn't covered by insurance, so we opted to wait and see. Later in the pregnancy, Jaxson wasn't growing. Or so they thought because his head was measuring small, and he wasn't moving around as much as Jeffrey had. Non-stress tests were done three times a week for the last 4 weeks of my pregnancy, until Jaxson decided he wanted to come early. That was a nightmare since we already knew he needed to go straight to the NICU at Nationwide Children's, and there were literally zero NICU beds anywhere in the city. If they couldn't stop me on 7/1/12, I would have been transported to Cincinnati to deliver. Thankfully, the labor was slowed down enough to be considered stopped and I was sent home. Three days later, we were back. This time I was already 4cm dilated and there was no stopping him. I arrived at the hospital at 1:30pm and Jaxson was delivered by C-section at 3:51pm on 7/4/12. I have never seen a hospital move so fast, at least not at that point.
They didn't raise Jaxson over the sheet for me to see him, but took him straight to the table for a once over. It felt like FOREVER before I finally heard his little cry. I sent my husband over to see him, even though he didn't want to leave my side. The neonatologist did exactly as I instructed him when we met the week before, he gave me the facts. As he told me the few things he saw off the bat, I just nodded with tears streaming down my face. I couldn't move from the drugs, so one of the nurses wiped my tears. My husband returned, but when I went to recovery, I instructed him to see to our family that was waiting. I still hadn't seen my baby. When I finally got back to my room, everyone was waiting. When they brought Jaxson by before he was transported, he was in an incubator and I was not allowed to hold him. I was so numb, I barely touched him. They gave me photos and took him away. I sent Jayson and my dad right behind them. I was stuck at the hospital for 2 days, dying inside knowing that no one was holding him, no one could comfort him the way I could. I was allowed to leave a day early because it was my second c-section and I proved that I was ready by moving around. They weren't going to keep me there any longer! My best friend's mom stayed with me and drove me straight to Jaxson. I still hadn't been home, hell, I hadn't seen Jeffrey in 2 days either.
If you've ever been in a NICU, you know how overwhelming it is to walk into the open bay. Machines beeping everywhere, lines in veins, lines in arteries, stickers on the heads and chests of babies, cannulas and respiratory devices, NG tubes and feeding pumps. Syringes, isolation clothing, incubators, tiny little babies literally on life support. It's definitely a shock to try and take it in, but the only thing I remember from that first visit is being able to see my baby, and then being told that I could hold him. They did not let anyone else pick him up until I could! The nurse helped me adjust all of the wires and I just sat there with him for hours. Until I had to leave, I did have another child after all. Jayson and I took turns going to see Jaxson over the next 6 weeks. We learned all of the things they found that would cause him problems in the future, including that he would need several major surgeries. We were hooked up with social workers who were amazing in handing over resources and helping us get things ready for home. But those first six weeks, those were so hard on everyone.
Fast forward a bit, Jaxson has regular PT, OT and speech therapies, regular specialist visits and has undergone 9 surgeries. He's 2.5 now, and after years of research and tests and countless doctors shrugging their shoulders, Jaxson received his diagnosis of Kabuki Syndrome. Excuse me, what was that? No, the doctor didn't sneeze. Kabuki syndrome is a rare genetic disorder, he did not inherit it from us, but it was a new mutation in his genes. At this moment, we should have been sent to immunology given the issues Kabuki can cause, but we weren't. And I didn't have time to even figure out that we needed to go, because around this same time, Jaxson contracted aspiration pneumonia after a routine MRI. Upon admission, one of the drs recommended that we get a heart echo because he hadn't had one for awhile, but it was the weekend and we figured we could do it outpatient. Two days after discharge, we were right back, the pneumonia wasn't going away. I requested the echo and that is when the extent of Jaxson's heart issue was discovered. He had severe mitral stenosis, so bad that they scheduled and did the surgery in 3 months. It almost didn't happen then because he had such a hard time fighting the pneumonia and it could have been dangerous, but I convinced the doctors (by threatening to take him elsewhere) to get it done. His first open heart surgery was in June 2015. We were told after the surgery that he would need a mechanical valve, but the doctor was hoping to give him more time to grow first. But Jaxson, as usual, had other ideas, and by September his numbers were back up. In December 2015, a cath was attempted, but caused a severe leak (which we knew was a risk), leading to emergency open-heart surgery the following day to have the mechanical valve placed. That surgery was at least seven agonizing hours, but I knew they had to be careful because Jaxson had coded in the CTICU twice that morning. Finally, the surgeon came out and let us know it was a success. Jaxson would be kept sedated and paralyzed for awhile to let his body recover, and he spent three weeks in the hospital that time. He made it home three days before Christmas.
It's been almost two years since then, and Jaxson has managed to mostly stay away from the hospital. Last year, though, he had the flue twice, RSV and pneumonia in a six month span, causing me to seek out an immunologist. Since we hadn't seen one yet, I opted to see a doctor in Cincinnati who specializes in Kabuki. Earlier this year, we learned that Jaxson indeed has a compromised immune system. He does not make any antibodies for the flu, so the flu shot is essential for his winter survival, and he only makes antibodies for 4 of the pneumonia viruses. He received the stronger pneumonia vaccine almost 2 weeks ago and we will have his numbers re-checked when we visit the doctor next month. But for now, Jaxson is seeing his regular therapists and specialists, and there are no surgeries planned. The last two years have seen Jaxson grow, and I mean actually grow to where he needs new clothes for once! The years have improved his speech one hundredfold, his fine and gross motor skills are catching up and he has emerged with his own vibrant personality that infects everyone he meets! He's happy, he loves life and he is a true joy. I would not change him or anything about him!
Some of you haven't followed Jaxson from the beginning, so I want to lay out his surgeries for you:
Feeding tube placement at 5 weeks
Craniovault Reconstruction (skull) at 4 months
Ear tubes placed
Tethered cord release at 8 months
Distraction surgery 1 (skull) 15 months
Distraction surgery 2 at 18 months
Cleft palate repair at 18 months (surgeries were not at the same time)
Ear tubes placed
Endoscopic Third Ventriculostomy (brain surgery) at 25 months
Open heart surgery at 35 months
Heart cath at 29 months
Mechanical Valve placement at 29 months
Keep in mind, that in between all of these, Jaxson likely spent some time inpatient with some sort of virus or illness. Until his heart was fixed, he couldn't fight anything. Now, while he still has a compromised immune system, he is bigger and has been able to fight off colds with a little extra help from breathing treatments. But if that's what it takes to keep him healthy, then that's exactly what we will do!
Kabuki Syndrome is not a fatal diagnosis, but there are issues it causes that can lead to a premature death. So far, Jaxson is living life as a happy 5 year old and I believe that he will continue to do so for a long time! We don't let possibilities dictate us or dictate what Jaxson is and isn't allowed to do. Sure, we have to be careful, he's going to be on a blood thinner for the rest of his life, but that doesn't mean that life stops or that we have to keep him in a bubble. No, he's a five year old boy who loves to play and be silly and dance and jump and run around like a chicken. He's so perfect, I couldn't imagine trying to keep him bottled up away from the rest of the world! The world needs his smile, it needs his laughter and it needs him to remind us that life is too short. Time to enjoy it while we can!
~"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 different." -Unknown
Thursday, September 28, 2017
Marveling at Jaxson, My Medical Miracle
So today I was digging around FB looking for a picture to show a friend. I never found it, but that's not what this is about. I came across photos on both of my sister's FB pages of Jax during some of his most difficult times. Right after he was born. When he was sedated and paralyzed after his mechanical valve was placed. Photos from when he had pins in his head for skull distraction. All things that bring tears to my eyes!
Remembering those moments is a hard, harsh reminder of everything that Jaxson has been through, and everything that he has yet to endure. But it is also a moment of wonder; look how far he has come! How many times has he defied the odds? Proven doctors wrong? Made us look for answers until we found them? I can't even count!
Jaxson has been through 12 surgeries and countless sedated procedures. He's been more stable over the last two years since his mechanical valve was placed, and his growth and maturation have blossomed into something beautiful. He's so smart, even if he can't always communicate it, and he is hysterically funny and loves to make jokes. He wants everyone to get along all the time and hates yelling (even at the dogs!). He is running, jumping, riding his tricycle and attempting to beat up his big brother when they play. He's a "normal" 5 year old in almost every aspect!
Does he have hurdles still in front of him? Of course. He has a compromised immune system that will likely land him in the hospital at least once a year in the winter. He has more heart surgeries to come as he grows and his valve needs replaced. He has weekly therapies outside of school, plus what he gets at school, to help combat his Global Delay and get him ready for kindergarten. He may need additional surgeries in the future, something we won't know until we get there.
But for now, Jaxson is healthy. He's stable. He has a ton of appointments, but all of them are follow-ups and not for a new problem. He brings joy to every person he encounters, just by flashing his adorably perfect smile. His new PT marveled to me the other day, it was their first appointment together, that he had made her whole morning. She was smiling and laughing as she brought him back because that spunky personality just makes you laugh!
I have tears, I hoped I wouldn't when writing this, but I do. I just can't get over how far Jaxson has come. Everything he has been through, every battle we've had to fight with him and make sure that he got what he needed, every tear we've shed and every sleepless night we have, it's all worth it. When I see him get off the bus and run to his brother or me or his dad (depends on who gets him off) with a huge smile on his face and a massive hug, I can't imagine anything better.
Jaxson, one day you will read these blogs. I've tried to keep up as best I can, and I know I'm not perfect at it, but I really hope that one day you will see the love you bring to people, and the love that people have for you. I hope you see that while mom was stressed and upset, I still made you and Jeffrey a priority. You are the light of my life, my little monkey. I know God has big things planned for you, and I can't wait to see what else you do to prove people wrong and be the most amazing you there is! <3
"Life is not the way it's supposed to be, it is the way it is. It's the way you cope with it that makes the difference."
Remembering those moments is a hard, harsh reminder of everything that Jaxson has been through, and everything that he has yet to endure. But it is also a moment of wonder; look how far he has come! How many times has he defied the odds? Proven doctors wrong? Made us look for answers until we found them? I can't even count!
Jaxson has been through 12 surgeries and countless sedated procedures. He's been more stable over the last two years since his mechanical valve was placed, and his growth and maturation have blossomed into something beautiful. He's so smart, even if he can't always communicate it, and he is hysterically funny and loves to make jokes. He wants everyone to get along all the time and hates yelling (even at the dogs!). He is running, jumping, riding his tricycle and attempting to beat up his big brother when they play. He's a "normal" 5 year old in almost every aspect!
Does he have hurdles still in front of him? Of course. He has a compromised immune system that will likely land him in the hospital at least once a year in the winter. He has more heart surgeries to come as he grows and his valve needs replaced. He has weekly therapies outside of school, plus what he gets at school, to help combat his Global Delay and get him ready for kindergarten. He may need additional surgeries in the future, something we won't know until we get there.
But for now, Jaxson is healthy. He's stable. He has a ton of appointments, but all of them are follow-ups and not for a new problem. He brings joy to every person he encounters, just by flashing his adorably perfect smile. His new PT marveled to me the other day, it was their first appointment together, that he had made her whole morning. She was smiling and laughing as she brought him back because that spunky personality just makes you laugh!
I have tears, I hoped I wouldn't when writing this, but I do. I just can't get over how far Jaxson has come. Everything he has been through, every battle we've had to fight with him and make sure that he got what he needed, every tear we've shed and every sleepless night we have, it's all worth it. When I see him get off the bus and run to his brother or me or his dad (depends on who gets him off) with a huge smile on his face and a massive hug, I can't imagine anything better.
Jaxson, one day you will read these blogs. I've tried to keep up as best I can, and I know I'm not perfect at it, but I really hope that one day you will see the love you bring to people, and the love that people have for you. I hope you see that while mom was stressed and upset, I still made you and Jeffrey a priority. You are the light of my life, my little monkey. I know God has big things planned for you, and I can't wait to see what else you do to prove people wrong and be the most amazing you there is! <3
"Life is not the way it's supposed to be, it is the way it is. It's the way you cope with it that makes the difference."
Friday, December 16, 2016
A Not-So-Friendly Reminder
Jaxson had his 12th surgery on December 5, 2015. It was his second open-heart surgery, the one where they placed his mechanical mitral valve. We spent three weeks in the hospital last year, but were lucky enough to make it home three days before Christmas. Jaxson's first Christmas was spent at the hospital when he had RSV at 5 months of age. He was discharged on Christmas day. I had to go back and look, but his second Christmas was spent at home. Only that year we were struggling so bad that the kids barely got anything from us. We did get donations that year, though, and the kids still had a good Christmas. It might not be Christmas yet this year, but it's pretty damn close. And here we are at the hospital once again with a case of RSV.
RSV is a respiratory virus that can cause bronchiolitis or pneumonia in children who have heart and lung disorders. In typical kids, it's a cold that requires monitoring and comfort as it mimics a common cold, but nothing more. In kids like Jax, it can be deadly. Most kids get it before the age of 1, but only a few who get it will get it again. This is Jaxson's second round with it, at an age it doesn't normally happen. On top of that, he has angiodysplasia of the colon (meaning the capillary blood vessels are weak and break easily) which causes bloody stool. Combine that with a high INR and now he has low iron. All of his other levels seem to be okay for the moment, but they are checking him regularly to make sure nothing drastically changes.
And thus is the ugliness of Kabuki Syndrome rearing it's even uglier head. Respiratory problems are common, and while Kabuki itself does not cause premature death, the problems it causes can. Like intense respiratory infections and viruses that don't respond to treatment, or take a really long time to do so. And here I thought Jaxson was going to be relatively "typical" from this point forward. I guess the joke is on me for putting on rose-colored glasses after a year with no admissions. (There was actually one, but it was only one night and it was to keep him hydrated for a procedure.)
So now that I've been brought back down to Earth, I have been doing some research on RSV and all of his other stuff. Nothing noteworthy yet, I haven't found anything that I didn't already know. But I do know that we won't be getting out of here today. And here I thought we were out of the woods. I forget that when you have a child with CHD who is also prone to respiratory problems, you are never out of the woods. Every illness is alarming. Every hospitalization has its own problems. Even if it's an illness that's happened before, this one will be different. It's an ever-changing thing because kids grow and change, their hormones and antibodies and bloodwork levels change. The way they react to treatment changes. It's an ongoing battle of figuring out what the problem is and how to tackle it in the most effective manner.
It is clear that winter is going to be a rough time for the rest of our lives. Keeping Jaxson healthy and out of the hospital has been near impossible over the last four years, with the exception of this past year, and I don't see it changing anytime soon.
The thing is, while worrying about Jaxson is always in the back of my head, in times like this I always worry about Jeffrey too. He's so worried about his brother, and because of flu restrictions, he can't come up and visit because he's too young. Both of them are cranky about it. And Jeffrey misses me, and I miss him. He gets shafted on so many things, we decided to take him to Chuck E. Cheese for his birthday last weekend. And then Jax gets sick. And Jeffrey loses out on doing certain things. We always try to keep it as normal as possible, but it's never normal when Jax isn't around. For instance, tomorrow the boys were supposed to go to the school where my dad works to play games and see Santa. Jaxson will not get to go now, but Jeffrey will. Only he won't have as much fun because Jax won't be there and he'll spend the whole time thinking about his brother. On Sunday, I had scheduled a private visit with Santa so we could get some decent pictures without the crowds. Not sure if Jax will make it for that either. I honestly don't think Jaxson has any photos with Santa yet, and he's 4. But Jeffrey will not like going on Sunday without Jaxson either and it's likely that he'll ask Santa for something for Jax. It just breaks my heart.
For now, I hope the doctors get to us soon so we can find out what's going on and what the plan is. I know we'll be here at least one more night, but I'm not sure if they have concerns over anything else yet. I pray we can go home tomorrow, or maybe even Sunday before photos. Please pray for the same with me.
RSV is a respiratory virus that can cause bronchiolitis or pneumonia in children who have heart and lung disorders. In typical kids, it's a cold that requires monitoring and comfort as it mimics a common cold, but nothing more. In kids like Jax, it can be deadly. Most kids get it before the age of 1, but only a few who get it will get it again. This is Jaxson's second round with it, at an age it doesn't normally happen. On top of that, he has angiodysplasia of the colon (meaning the capillary blood vessels are weak and break easily) which causes bloody stool. Combine that with a high INR and now he has low iron. All of his other levels seem to be okay for the moment, but they are checking him regularly to make sure nothing drastically changes.
And thus is the ugliness of Kabuki Syndrome rearing it's even uglier head. Respiratory problems are common, and while Kabuki itself does not cause premature death, the problems it causes can. Like intense respiratory infections and viruses that don't respond to treatment, or take a really long time to do so. And here I thought Jaxson was going to be relatively "typical" from this point forward. I guess the joke is on me for putting on rose-colored glasses after a year with no admissions. (There was actually one, but it was only one night and it was to keep him hydrated for a procedure.)
So now that I've been brought back down to Earth, I have been doing some research on RSV and all of his other stuff. Nothing noteworthy yet, I haven't found anything that I didn't already know. But I do know that we won't be getting out of here today. And here I thought we were out of the woods. I forget that when you have a child with CHD who is also prone to respiratory problems, you are never out of the woods. Every illness is alarming. Every hospitalization has its own problems. Even if it's an illness that's happened before, this one will be different. It's an ever-changing thing because kids grow and change, their hormones and antibodies and bloodwork levels change. The way they react to treatment changes. It's an ongoing battle of figuring out what the problem is and how to tackle it in the most effective manner.
It is clear that winter is going to be a rough time for the rest of our lives. Keeping Jaxson healthy and out of the hospital has been near impossible over the last four years, with the exception of this past year, and I don't see it changing anytime soon.
The thing is, while worrying about Jaxson is always in the back of my head, in times like this I always worry about Jeffrey too. He's so worried about his brother, and because of flu restrictions, he can't come up and visit because he's too young. Both of them are cranky about it. And Jeffrey misses me, and I miss him. He gets shafted on so many things, we decided to take him to Chuck E. Cheese for his birthday last weekend. And then Jax gets sick. And Jeffrey loses out on doing certain things. We always try to keep it as normal as possible, but it's never normal when Jax isn't around. For instance, tomorrow the boys were supposed to go to the school where my dad works to play games and see Santa. Jaxson will not get to go now, but Jeffrey will. Only he won't have as much fun because Jax won't be there and he'll spend the whole time thinking about his brother. On Sunday, I had scheduled a private visit with Santa so we could get some decent pictures without the crowds. Not sure if Jax will make it for that either. I honestly don't think Jaxson has any photos with Santa yet, and he's 4. But Jeffrey will not like going on Sunday without Jaxson either and it's likely that he'll ask Santa for something for Jax. It just breaks my heart.
For now, I hope the doctors get to us soon so we can find out what's going on and what the plan is. I know we'll be here at least one more night, but I'm not sure if they have concerns over anything else yet. I pray we can go home tomorrow, or maybe even Sunday before photos. Please pray for the same with me.
Friday, April 8, 2016
More About Milestones, Update on Progress
I know I've been talking about milestones a lot recently, but it's because Jaxson is doing better than he ever has in his life. Which means that he's surpassing milestones at a much faster pace than before, which is amazing to watch! There will be an album of photos uploaded with this blog because there's just so much to share!
Jax managed to have all three of his home-based appointments this week! That one's amazing because there's always something coming up. But he did, and at each appointment he impressed me with things he was able to do and understand.
On Monday, Miss Jennifer came over for speech. Jax worked on putting things in order, recognizing an action from a picture, using his words to get what he wants, and recognizing facial expressions. Seriously, he did fabulous! Putting pictures of an action in order is a hard thing, and he didn't get them all, but got more than I thought he would. He used his words much more appropriately, recognized several actions from pictures and started to understand the difference between a smile and a frown. He had a speech appointment on Thursday at NCH as well, and with Miss Mary Jax started referring to himself as "me" or "I" instead of "Jaxson" in the third person. He also recognized more farm animals!
Yesterday, OT came to the house to work with Jax and play. He did some coloring, he recognized that Elmo was jumping in his picture, he stacked items with ease and had no trouble with the wooden puzzle Miss Dara brought. We also practiced throwing and catching, which is going to take some work with his awful balance and coordination!
Today, Miss Kathy came over to work on communication and social skills. Jaxson successfully clipped several frogs to their matching color on a piece of paper, matched shapes drawn on clothespins in a similar task, was not interested in coloring at all, and he worked more on recognizing an action in a photo, matching toy items with what was happening in a book, and flipping frogs into a bowl. There's a video of him flipping the frogs, which I took because it's seriously amazing. I don't know if I ever thought he'd be able to do something like that, it's totally not easy even for a typical kid, but he tackled it first with his finger and did even better with his thumb.
Jaxson impresses me all the time. He is so independent and wants to do everything that we do, even eat when he's feeling well. Not meals or anything, but a few nibbles here and there. Something is better than nothing! He is full of life and love and energy and spunk and an ornery grin to get him out of serious trouble! He's amazingly perfect and doing so many things we once couldn't even consider. I mean, when he was born, the doctors didn't know how long he'd live, let alone what kind of life he would have. Now look at him. Vibrant and strong, a warrior to the bone who continues to defy all odds and win battles he could have easily lost.
Our family is on the rise, finally. Four years of hard work, patience, scraping by and barely getting out of bed in the morning have given way to a much more relaxing life. There are still a ton of concerns with Jax, lots of things we are watching and communicating with doctors about. But there's so much to celebrate, I don't want to talk about the rest. Jax is happy, he's as healthy as he's going to get and always and forever my little lover boy cuddlebug. :)
~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
Jax managed to have all three of his home-based appointments this week! That one's amazing because there's always something coming up. But he did, and at each appointment he impressed me with things he was able to do and understand.
On Monday, Miss Jennifer came over for speech. Jax worked on putting things in order, recognizing an action from a picture, using his words to get what he wants, and recognizing facial expressions. Seriously, he did fabulous! Putting pictures of an action in order is a hard thing, and he didn't get them all, but got more than I thought he would. He used his words much more appropriately, recognized several actions from pictures and started to understand the difference between a smile and a frown. He had a speech appointment on Thursday at NCH as well, and with Miss Mary Jax started referring to himself as "me" or "I" instead of "Jaxson" in the third person. He also recognized more farm animals!
Yesterday, OT came to the house to work with Jax and play. He did some coloring, he recognized that Elmo was jumping in his picture, he stacked items with ease and had no trouble with the wooden puzzle Miss Dara brought. We also practiced throwing and catching, which is going to take some work with his awful balance and coordination!
Today, Miss Kathy came over to work on communication and social skills. Jaxson successfully clipped several frogs to their matching color on a piece of paper, matched shapes drawn on clothespins in a similar task, was not interested in coloring at all, and he worked more on recognizing an action in a photo, matching toy items with what was happening in a book, and flipping frogs into a bowl. There's a video of him flipping the frogs, which I took because it's seriously amazing. I don't know if I ever thought he'd be able to do something like that, it's totally not easy even for a typical kid, but he tackled it first with his finger and did even better with his thumb.
Jaxson impresses me all the time. He is so independent and wants to do everything that we do, even eat when he's feeling well. Not meals or anything, but a few nibbles here and there. Something is better than nothing! He is full of life and love and energy and spunk and an ornery grin to get him out of serious trouble! He's amazingly perfect and doing so many things we once couldn't even consider. I mean, when he was born, the doctors didn't know how long he'd live, let alone what kind of life he would have. Now look at him. Vibrant and strong, a warrior to the bone who continues to defy all odds and win battles he could have easily lost.
Our family is on the rise, finally. Four years of hard work, patience, scraping by and barely getting out of bed in the morning have given way to a much more relaxing life. There are still a ton of concerns with Jax, lots of things we are watching and communicating with doctors about. But there's so much to celebrate, I don't want to talk about the rest. Jax is happy, he's as healthy as he's going to get and always and forever my little lover boy cuddlebug. :)
~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
Monday, March 28, 2016
Every Milestone Makes a Difference
I can't believe it's been so long since I've updated the blog. Things have been so busy recently, I've been working, Jayson has been working, Jeffery is doing well at school academically but hates going (which I think is weird for a first grader) and Jax had has his usual slew of appointments. But that's not what this post is about. This post is about an accumulation of baby steps amounting into something tangible measurable, a realization I came to during our very busy Easter weekend.
Jeffrey did not have school on Friday and Jayson didn't have to work because it was Good Friday, so when it came time for me to work in the afternoon, Jayson took the boys to visit his mom and Jeffrey spent the night. He was picked up pretty early on Saturday because we went to an Easter Egg hunt at a park in my parent's neighborhood. We were there for HOURS! It was a blast. Then we went home for a few, I had some errands to run for Sunday, and then I came back to get the boys. I took them to pick up my parents from the airport (they spent the week before in Ireland!), so of course we stayed to visit for awhile. The boys didn't go to bed until really late, and I had to wait until they were out to do their Easter stuff. Easter morning was a sleepy one, but when Jeffrey finally got out of bed, the boys got to see their baskets (giant surprise eggs I made using items from Dollar Tree), and when it warmed up we went outside. We didn't go anywhere yesterday, but we played outside most of the day. Although, I did get a nap too, thanks to Jayson!
I wanted to let everyone know what we did before I elaborated on milestones. You can see it was a busy weekend, and both boys are pretty worn down today, which is great since I'm not feeling well! Must have picked up a stomach bug at the park haha.
So, let's backtrack a little. Thinking back to when Jaxson was born, we had no clue what the extent of his disability would be. The doctors didn't even know if he would survive or for how long or anything. He had no diagnosis, so no prognosis. We were thrown into a world we were unfamiliar with, one which was terrifying and gratifying all at the same time. We knew we'd have lots of specialists, but our biggest concern was making sure Jax would be as normal as possible. So we started OT/PT and Speech early in his life. Weekly and bi-weekly appointments for the last four years (going back to the end of my pregnancy), plus specialist visits and countless tests has been exhausting. But watching Jaxson this weekend, I realized that every little hurdle and obstacle we endured were absolutely worth it.
I get a little sad watching Jaxson on the playground sometimes. Especially when there's a lot of kids, and this weekend there were a LOT of kids. Excited kids who are just kids. Jaxson can't keep up with them. He can't climb like they can, he's terrified to try the slide by himself around a lot of people, and he gets brushed to the side, passed by pushy kids trying to get to the slides, and sometimes he just stops to let all the other kids go before he keeps trying. It breaks my heart to see this. But yesterday Jaxson taught me something. He taught me that he has more determination and drive than I realized.
Take a look at this picture:
Jayson found a plank of wood and put it diagonal from the driveway to the yard because there's a huge gap between it and the ground. Jaxson was scared of it at first and wouldn't try, but all I had to do was help him once. Once. Then he was off, walking up and down the ramp, chasing Jeffrey and even tripping a few times with no tears. He would just get up and go again!
This is so different than how things used to be. You're looking at a kid who is terrified to use steps he doesn't know, doesn't want to climb on things without someone close by and has very little confidence in his capabilities. We try constantly to have him do as much as he is willing to do by himself, but it's not always much no matter how hard we push.
So Jaxson really recognized that he was different this weekend, noticed that he couldn't keep up, and he didn't like it. He won't work on those skills anywhere outside of his comfort zone, so this ramp is a big step in him gaining confidence in himself. And he wouldn't even be where he is without all of the ridiculous nonsense he's been through. PT, OT, Speech, surgeries, meds, hospital stays, all of it. Every little step, as tiny as sitting up on his knees for five seconds without help, has contributed to where he is. And he is amazing!
Noticing this on Easter I think had a more profound impact on me than it would have on any other day. Easter is about celebrating Christ forgiving our sins, which goes hand in hand with starting over and having a new beginning. Jax got his new beginning in December when they replaced his mitral valve during his second open-heart surgery. It's taken some time for him to get back to normal, and his normal is definitely not what it used to be! He's highly energetic and rotten and smart and funny and caring and a huge lover. He's independent as much as he can be, and gets mad when you try to help him before he's ready. I don't know where he gets that ;)
So this will be a new beginning for all of us. A new beginning as a family that can finally do things together without as much worry. Taking Jax to the park on a day like Saturday even six months ago would have meant a hospital stay with a respiratory issue gone out of control. Not now. He may get a runny nose or sneeze or even get a little cold, but it's not an automatic stay anymore. We still have to be very careful because of his heart, he is still more susceptible to illness, but we can relax a little and take him out of the house with more ease now. Which means plenty more trips to the park, COSI, the zoo, wherever I feel like taking them this summer!
So, for mom's out there who are dealing with the beginning stages of this journey, please know that every step is rewarding in it's own way. Every step is a learning experience, every milestone a celebration, every corner turned a relief. Jaxson still has many problems and I still have to watch him like a hawk, but his physical ability is far greater than we every thought it would be. And when that hits you like a ton of bricks on Easter, it's pretty deep.
~"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
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