13 Months

One month older and ornerier too - happy 13 months to you!

We got back on Saturday from our first road trip with Maddox. We all survived. Though survival, at points during the week, seemed in question. Maddox proved to be much less well adjusted than we had hoped. It was very interesting to see how he was out of his element. On top of being forced to ride in a car for two days straight and sleep in a new place, the entire family got sick with a bad cold/respiratory virus. Maddox, as well as the rest of us, felt awful the whole week, and slept poorly, due to coughing and nose blowing, and overall feeling like crap. That is enough to mess with any one's mood. Despite being sick, we had a nice time in Florida and did basically everything we had planned. We just did it all feeling lousy. And of course we made sure to leave our germs with my sister and her family, who so graciously housed and fed us and watched Maddox while the rest of our little family went to Disney World. Yes, my sister is a saint. Thanks Aimee(and Peter, Megan, Madilyn and Nick and Ashlie too) for everything! You guys are the best! Maddox required Aimee to hold him the entire day, or at least when she wasn't getting meds, or managing his g-tube feeds, giving breathing treatments, and trying to cure his newly developed constipation-as of this trip. Yes, a saint I tell ya.

Maddox is continuing to make progress in lots of areas. He is also showing his strong will and turning into a full fledged toddler, complete with tantrums, hitting and refusing to do anything you ask him too. He really can be delightful, but I think we are at one of those rough patches, due less to actual health problems and more to behavioral stuff. Somewhere in my subconscious I think I assumed that because of all of the junk he's gone through to get here and stay here, he was destined to be practically perfect. So maybe not perfect, but I think I felt like it was only fair that he have a calm, easy going personality, that he didn't fuss, that he smiled and cuddled(which he does for immediate family), and that he would be in all ways charming and have no flaws beyond the glaring health ones. Alas, it is not to be. He's just as stubborn as his mother. It's a good thing he's cute.



He is definitely getting stronger and now weighs a whopping 19lbs. We are still trying to help him learn how to crawl. I really think he could if he wanted to. He objects strongly to his physical therapist's attempts to work with him. I think it is part frustration at being asked to work, and part some serious anxiety around other people. He does much more for me when she isn't here. He screams and cries and pushes her away. Poor Miss Vicki. She is the nicest lady, but Maddox has a love-hate relationship with her. We will hopefully - if approved by insurance - be increasing PT to 8 times a month, with the hope that Maddox will progress quicker at his gross motor skills. He is basically on target for fine motor, so his OT(occupational therapist) is working primarily on feeding during her 8 visits a month. And soon we will reintroduce a regular dietitian to our monthly home visits. It is busy as ever around here.

For Maddox, crying usually leads to a major coughing/gagging/retching fit, which sounds awful and gets us some embarrassing attention when witnessed by people in public places. We often have to help suction out nasty secretions with an aspirator so he doesn't completely choke. He returns to his normal color pretty quick, but yeah, it draws some attention. I've decided that these fits are in part a behavioral issue that he will hopefully overcome. When he gags and coughs it gets people running to him. And after spending most of his life vomiting violently, I think he likes the endorphins that are released after going through the motions of vomiting since he is no longer able to actually vomit. Since he seems to have a perpetual cold some of these fits are legitimate and productive at clearing out his flemy throat. So, my question is: as a mother who wants to care for her child and also help him develop into something other than a tyrant, how should I respond to these fits of his? I am literally at a loss. My sister and I actually termed him "the little tyrant" and decided we need to dress him up as Napoleon Bonaparte for Halloween next year. It is so fitting-they both even have a stomach complaint. HA.

We have been working hard on switching up his g-tube feeds as well. I am actually quite proud of myself for going from continuous feeds for 20 hours a day to 6 bolus feeds during the day and nothing at night. I have figured it out basically on my own, which honestly isn't rocket science, but has been a real concern of mine. He is tolerating it well and we are really now hoping to progress in the oral feeding department. He just doesn't really care about eating. He'll put food I give him in his mouth for a brief second just to appease me, but it doesn't stay there. I tried giving him an Andes' Mint today, which he tolerated better than I thought he would. But honestly, it's chocolate -what's not to like? The feeding thing is a struggle for me. If I really pushed it on him consistently for a few hours each day, we'd probably see more progress. The issue is that I like the g-tube. Kind of. I like how convenient it can be. I like how I can set it and then walk away and know that he's getting fed. He can eat in the car, while he's sleeping, while he's playing or having therapy, etc... I know he's getting his meds and not spitting them out. It is super nice, especially since we are working so hard to keep him growing. So, my goal for the next year is to make serious strides in the feeding department. We'll see how it goes.

From a cardiac perspective Maddox is doing very well. His heart looks good, and his mitral valve, as of October, appears to be leaking a little less. His LA(left atrium) pressure was slightly lower. Also good. The only thing that is at all concerning is his homograft, which is the preserved pulmonary valve of a cadaver that was put in during the Ross procedure of his open heart surgery. It is starting to leak more. We know that it is just a matter of time before it needs replaced. The surgeon initially hoped that it could last until Maddox was three of four years old. It doesn't grow with Maddox's heart so eventually he will need a larger one put in. We are hoping that he has another good year until he needs another heart surgery. It would be great if he was mostly caught up developmentally before he has any more surgery. But as we know, things don't always go to plan. So we continue to work and try not to think too far ahead. Maddox is after all running this show! At least he thinks so.