My mornings currently
I am working on getting to a place where I am not in survival mode every morning. Allow me to explain.
For the past week, we believe Leo's teething has really ramped up. He seems to be getting 5 or 6 year molars (he's 4.5 yrs old). I'm never certain that it's teething. But I'm as certain as I can be. But for the last week, he's been grinding his teeth on another level, much more frequently and with a much harder bite. He also has more saliva and snot. And we've had many instances of unexplainable pain or discomfort that Tylenol has seemed to help. It's kept him up at night sometimes. And overall, generally smaller discomforts seem to be more magnified when put together with teething.
Thus, his mornings have been very difficult for me as well as for him. So, Leo gets food through his g tube at night, fed very slowly. He sleeps--as best we can keep him--on a bit of an incline so as to help his reflux. However, it has seemed to be common that when Leo wakes up, the reflux bothers his throat, mucus and saliva have increased (I believe reflux can cause this, as well), and he usually hasn't pooped yet. He's also dealing with a tummy that's somewhat full. What this means is after he wakes up, he's usually grinding his teeth, coughing, and puking up snot for about 1.5 hours. With teething, the grinding and gagging has just been worse. I'm struggling.
I literally wrote down a list last night to try and brainstorm ideas to help my mornings not be consumed by trying to keep my cool and hear as little teeth grinding as possible. I struggle SO MUCH with hearing it. I can get much less compassionate in how I move him when his limbs are straightening with such force as he coughs up some snot. I don't mean to gross anyone out. And I've been brainstorming ways that I can help his stomach wake up better, too. I want to help him be more comfortable, but I haven't found a way out of these mornings yet. So we have to go through them.
We have a teething tool that I can put into his mouth for him to chew on. I do that when he grinds his teeth. Often I will put a tv show on to help distract me. I would sit with him while I give him his morning meds slowly and hold the tool in his mouth while I hold him up. Often the meds eventually start to help his stomach calm down. However, as a personal habit, I am pulling back from screentime significantly. Consequently, his mornings have been more difficult because I'm simply sitting there focused on his teeth grinding and continually reminding myself that he's uncomfortable not being a pip.
I don't know if it sounds like I'm being really dramatic or like I'm just complaining a lot. I don't mean to communicate either of those things. While I do think his mornings can be a bit dramatic, I'm just trying to say it's hard to keep my cool. It's mentally and emotionally very taxing. And I'm tired of feeling like a good portion of my morning is taken up by simply trying to survive. I would like to enjoy time with my son. I would like to help him. I would like to mentally put energy into what we have going on that day and how I want to start that day. And it doesn't feel possible.
Well, these are some of the ideas that I'm trying. First, I got up a little earlier so I could set the vibe. I put on some acoustic chill Christian music, set up a cozy spot on the couch, lit a candle so the house smelled like Christmas, and got a drink for me right beside it. This morning it was water with lemon, but I might try some tea or coffee. I want to set the vibe of the morning that I am going for. Another idea I had was that maybe a walk outside would do both of us good. So I would set out our cold clothes in order to make getting ready for a walk as simple as possible. I also have some podcasts that I enjoy listening to that are helpful in the mornings. And maybe Adventures in Odyssey!
Those are the ideas that I have so far. I've been trying other things in regards to helping Leo's stomach wake up better. But I just wanted to share all of this for three reasons:
1) I wanted to say that listening to teeth grinding is HARD for me.
2) to be able to tell people some of the thought processes that I go through and try and show what problem solving looks like for a medically complicated kid. It's a constant thing in parenthood, for sure.
3) and to get your ideas if you have any about how to approach these mornings with intentionality.
Hi, Charis! First, thank you for continuing to share your, Brad's and Leo's journey with us. I wish the technology for all of this was around when my sister was born, with an unknown issue, which turned out to be brain damage due to oxygen being cut off during birth. I wish the technology was around 29 years ago when my son was born, and I struggled with the puking and snot issues, due to undiagnosed cystic fibrosis. But, it simply wasn't around.
ReplyDeleteI, too, dealt with snot pukes and bed wedges, which wasn't ideal. On the plus side, as he got a little older, a bed wedge was his primary item on any trip anywhere. Now he seems to not rely on that at much. But it lasted well into adulthood. With my sister, we deal with the brain damage. But, Leo, like Carmie, shows in his photos joy, and that is most important. At 57 years old, she is still joyful, and loves to be around people.
Leo's joy is his gift to all. I feel it, and I haven't even met him in person. I can see it in photos, though. It touches my heart.
As to ideas, a bed wedge is a great tool. While in his crib, we kept my son's mattress slanted, which was helpful while he slept. Secretions are tough, especially when it isn't as simple as saying, "Cough it up."
The medically fragile child is something you may want to prepare school for - whether a public school or special program. Educating other's to care for your child is important. I did education for every person in the school, during in-service prior to the start of the school year. As Zach aged, it wasn't as necessary, as he could advocate for himself. But there were times when I had to intervene on issues.
With my sister, who was at a "special" school initially and in public school in a special classroom later on, my parents didn't have to focus on much medically. But they did have to focus on behaviors due to frustration on Carmie's part about not being able to communicate in the "normal" sense. Even now, at 57 years old, she can occasionally get frustrated when people don't understand her. As she has aged and I have become her active guardian, I have had to experience things with her, such as getting her a mammogram. I did mine with her, so she could watch me and then do hers. It worked. But these things require thinking outside the box sometimes, and convincing doctors that your idea is the optimal one.
I wish you the best, always. I am always available if you ever wish to run an idea through someone who has had to navigate a lot medically. I am no expert, but I do know how to be pushy when need be. Melinda knows how to reach me. (And I am so grateful she and I were able to have a nice long breakfast this summer.)