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.

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

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