August

We had two ER visits in the span of a week. That sounds a lot more dramatic than it was, but it wasn't easy either. We've had canceled and rescheduled appointments in there. Today was our first day of therapy again after a bit of a break due to all the stuff getting taken care of. This blog post is a bit scattered because I wrote some parts of it and then another appointment or phone call happened. Please excuse the scattered thoughts. I don't want to rewrite stuff again and again. We have some appointments a bit up in the air. And we still have some questions moving forward from our last ER visit. But I hope this is a bit of a clarifying update. Thanks for being with us through it all. 

I really don't want to sound dramatic. We really are doing well. So thankful for community and our God. 

If you've been curious about how we're doing....this is a bit of it :)

ER updates

So we ended up having to take Leo to the ER again on Wednesday. It was a whirlwind. He had some blood in a puke on Tuesday night. We talked with a couple of people and decided to talk to GI and nutrition the next day. I already had a nutrition appointment the next day. His night was alright, but Wednesday morning he had another snot and blood puke. Sorry if this is too gross…my phone has puke and poop pictures on it, so that’s just where we are right now.

We drove up to Hershey in case they would need to admit him to the hospital. Our pcp is at Hershey and we have some friends who work there, too. Also, Hershey has a Pediatric Emergency department.

So there was talking and explaining and vitals taken and showing of pictures. They decided to do some blood tests and a stomach x ray. Please just know that this is very simplified explanation. So there was a lot of waiting around as they got those done and then waited for the results.

As far as I understand, the x ray and bloodwork showed that things were "normal" meaning there's no immediate internal-bleeding-blood-loss-blood-where-it-shouldn't-be concern. So why was there blood?

The x ray showed that Leo was constipated. After talking with GI, they adjusted some of his meds and we did an enema. The plan was to follow up with GI the next day and monitor puking and blood and eating. 

So where are we now? The adjustments have helped to clear him out. He's so much more relaxed and happy. Eating and puking are better as well. The pukes are less. And there's no blood. But where do we go from here?

We need to go a bit further into the puking problem because his weight has plateaued. He needs more calories. But we don't want to give him more food when he's already showing us that he's too full. We are discussing future plans with GI. Then we will talk with nutrition. Right now, as I said, the whole digestion thing seems to be going better. But do we just wait things out? Do we do some tests? Do we take extra measures? Please pray for wisdom.

At the moment, we are very grateful that Leo is more comfortable and happy. We are grateful for his medical team. And we're grateful for all that we are learning about Leo's body. Looking back, we've come a long way. We're also grateful that even with Leo's failure to thrive past, when we look at pictures from a year ago, we can see that he's grown. 

Upcoming appointments 

Prayers appreciated for our upcoming appointments. The one that I (Charis) am most apprehensive about is with our nutritionist. Now, I love her and she’s amazing—SUCH a God-send. But we know that Leo needs more calories which means upping the volume of food that he gets. I believe that his nights will get bad again when we up his food. Last time (in January) we upped his food it took about 4 months for his body to adjust to the new volume. This is my understanding of what happens.

- He needs calorically much more food than his body wants. So as we feed him, his body is uncomfortable with the amount of food in it and he pukes—low muscle tone and reflux are big factors in making puking his body’s response to this. Also, he gets fed for 24 hours. While his night feed is significantly less than it used to be, Leo’s body is still not getting a break from digesting food. So whether we add food to his night or day feeds, usually it has meant later nights and earlier mornings because laying down and having reflux is difficult. 

All that to say, I am anticipating his nights to get a bit more rough. But, also, each time we have had a transition like this it’s been just a little bit better than the last time. Our night nurse is wonderful, too! I’m thankful to have her! 

We are also seeing the CP Clinic at CHOP and some “Hereditary” Clinic thing. The CP clinic I don’t expect to be much. I think it’ll be a check in and they’ll look at his hips and joints and mobility and such. I feel like they could tell me something about his mobility and development that would be hard to hear, but I’m not scared of that right now. God will be with us if/when something hard comes. But I try not to live in fear of the future. We enjoy Leo and nothing about his future takes away the joy of him. 

This “hereditary” clinic thing. It’s a cancer screening thing. Sorry if I’m repeating myself, sometimes I forget what I have written on the blog about. So we did genetic testing a while ago to see if we could find any answers as to why Leo suffered the brain injury at birth. They tested me and Brad and Leo. They found a gene change in me and Leo that could make us higher risk to develop cancer. That’s very layman’s terms, but you get the gist. This gene change also doesn’t seem to relate to the brain injury at birth. But, this means that they suggested some earlier screening than typical for Leo and I. We will have our first visit for Leo with this clinic to just learn more about what they do and hear what they recommend. 

Honestly, we’ve been a little skeptical of this one. It kinda feels like we’re trying to stop every little problem and that’s just not a way to live life. But, we do think that it would be good to just learn more about the situation, concerns, and how they recommend we handle it. Educate ourselves, I guess is what I’m trying to say. It’s good to educate ourselves, maybe get some baseline tests for Leo, and then proceed from there. 

I am taking my own steps in this, too. 

Thank you

We got this is the mail this week. Thank you to whoever sent it! It’s got beautiful illustrations and we like the devotionals.