Jaxson has been home for a week. And I swear he knows every time I sit down to blog. As soon as I put the iPad on my lap, the kid throws a fit. I've been trying to write this post for five days! So before he pitches a fit again, I'm going to give a short version. I think.
Jayson and Jeffrey seem to be adjusting well to their new routines and roles in the house. Jeffrey is a little more sensitive and needy, but Jayson and I have been trying to give him some special attention here and there and it seems to help. His stutter gets pretty bad when he feels like he's being left out, such as when it takes both Jayson and I to feed Jaxson. But most of the time he acts like a normal three year old and entertains himself. We are lucky to have such an amazing and mostly understanding little boy. He may act like a normal three year old most days, but other days you can tell he was given to us for a reason. Not many kids could handle what he's had to and will have to endure. But I do t worry about Jeffrey. He's always adjusted well and I don't anticipate this being any different. And I know he'll grow up protecting his little brother and doting over him all through this process. We are truly blessed to have him as our son.
Jayson is handling staying at home like a champ. Jaxson's bottles and feeding equipment are always clean, the kitchen is always clean, the laundry gets done and there's usually dinner when I get home from work. I'm so lucky to have a partner who is comfortable enough in his own skin to take part in such a role reversal. It's been a tough week on both of us because of that, but everyone is figuring out their respective routines. Jayson is an amazing father and husband. Sure, he gets frustrated, as we all do, but he's also shown mad patience in times when I would pull my hair out. I admire his ability to keep his cool 97% of the time.
Jaxson seems to be adjusting okay. Today we decided to change a few things around. We upped his feeds yesterday and the poor thing didn't sleep a wink last night. Which meant that mom didn't sleep either. And I now it's because his belly hurt. So today we decided to let him dictate when he eats instead of continuing on this rigid schedule. I know he's been on this schedule for 7 weeks, but with the continuous drip in his tube at night it's just not working. We're going to cut out the drip and feed him like a regular baby. Even if we don't give him a bottle at night and put his food right in his tube, at least he'll get fed and calmed down much faster than he has been. I believe that he's not sleeping cease even though he's got the pump, he's still hungry. Has body doesn't understand the switch from his daytime schedule to his nighttime schedule. So we are going to try this and see if he does better. And hopefully in the process Jayson and I will get more sleep.
And then there's me. I got to spend a whopping 48 hours with my family together last weekend before returning to work on Monday. I worked a full week and took m turns with Jaxson when I had a later shift at work the next day. I'm exhausted. My back hurts. But my baby is home. It's worth it. Adjusting to being the sole breadwinner is a little rough. I want to be home with my family. But someone has to work, and for us that person is me. Thankfully Jayson can still tattoo to supplement my income, but I still have to have a regular job. Some days it's nice to go to work and get a break from the kids, but most days I just miss everyone all day. I know I will get used to it as time goes on, but for now it's a little rough.
The last two days have been really nice though. I've gotten to spend some quality time with my family and really see what Jayson does all day. I try to help him when I'm home and he yells at me to sit down. Like I don't sit down all day at work! But I appreciate that he recognizes that I'm tired when I get home, and this weekend has been nice just relaxing.
Now that we've got our routines, I think that everyone is going to begin adjusting even more. Jaxson's appointments (he's already had 2) will throw certain days off, but I've been lucky enough to be able to schedule most of my days around them to help out with Jeffrey. Well that and I want to be there too. Last week Jaxson gained 4 ounces in 2 days! I can't wait to see what he weighs when the nurse comes out on Wednesday. Thursday marks his first of 9 days of appointments over the next 3 weeks. Notice I said 9 days, not 9 appointments. Some of those days have multiple appointments. Thursday we meet with Dr. Pearson of plastic surgery to discuss the skull surgery and probably set up the appointment for the 3D image of his skull as well as his brain and spine MRIs. More appointments to add the list.
And so Jaxson's journey through life truly begins. He's home. And he's got a long road ahead of him. It's time to settle in and take all of this in and see what it really means and how it's not only going to affect Jaxson, but the rest of us. Jaxson is a fighter and he's already proven that his will to get through these first rough patches will supersede anything that's thrown at him. He's going to be mentally and emotionally tougher than any other kid his age. He may not get to be physically stronger or allowed to play sports like his brother, but he'll make up for it in other ways. And who knows, he might surprise us and be a fantastic sportsman. His little body has already endured so much that I don't doubt his ability to prove everyone wrong when he wants to.
This journey is truly going to be the ride of a lifetime. As draining as it has been and will be in the future, I wouldn't have it any other way.
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