September Update

It feels like so much has been going on in our lives; at the same time, there's nothing new. I don't think it's that there's nothing new, but there's still a lot of waiting and limbo with certain things. But depending on how things go, big changes could happen...but we just have to wait right now...I don't know, but it feels frustrating. Things don't feel super clear. So, I'll list some basic prayer requests out right now and elaborate after that. Especially as a global thinker, it's not easy to linearly explain everything that's on our radar right now.

Prayer requests:

1) That Leo would not lose weight. That he would gain weight at the rate that God wants him to gain. And that we would have wisdom to know what's concerning and what's not.

2) For the puking to subside more.

3) For carseat, stander, and stroller to continue to improve. Leo's getting bigger and transporting him around gets more difficult without functional use of equipment.

4) That God would help us (parents and medical team) figure out Leo's digestive system. We're still addressing the issue of constipation and assessing how that's affecting his puking and reflux.

5) That Brad and I would let go of control.

Elaborations:

So all the digestive stuff. Leo's doing well right now. We switched up his feeds and he's been handling that well. He's regularly getting all of the food that he needs. He's still sleeping at night. He's had phases of little to no puking. He's also had days where he's puked after each meal. It's hard to tell what the overall patterns are when you're in the midst of it sometimes. He had lost weight from June to August but was back up in the middle of September. We are going to check his weight in the middle of October. If he has not lost, we will keep things the way they are. If his weight is down, the GI doctor and nutritionist want to switch Leo to a partially digested formula--easier for his system to digest. If that were to not work, they would want to do a GJ tube which feeds right into the small intestine. The small intestine has to be fed very slowly, so that would mean more time that Leo would be hooked up to the feeding tube, like all day.

We are very nervous about those changes. I am grateful that the GI doctor said the GJ would be the last resort. But it has been very stressful to live with this impending weight check. Even that wording shows you how we view it. Changing Leo's food could lead to helpful things, it could also lead to so many more questions, an uncomfortable lion man, way more puking, less sleep. Would they want him in the hospital again? It's just easy to let fear get the best of us when we don't keep it in check. Feeding stresses are not fun. Right now, it honestly feels like he's doing well. If I forget about the weight check we have coming up, he's doing well. We're moving in the direction of less puking.

The other thing is we're trying to address constipation. The second time in the ER showed us that he had some stool backed up. We addressed that with some extra measures for about a week. He was good for about two weeks, but I believe we have started to see that affecting him again. But it's hard because he can't tell us what's up. It's a bit of a guessing game. The doctors know that we are trying to address the constipation at home. I called my sister to help me come up with a plan and know how to address it because it's very unclear. It's a lot about reading him. It's been stressful. I'm also afraid that I am seeing constipation issues where there are none simply because I don't want his feeding routine to change. I don't want to be in denial. Please pray that God would give Brad and me wisdom to see things for how they really are, and give us the words to communicate what we need to. Doctors aren't bullying us into decisions. They're doing their job. But I'm wondering what change is necessary. So, clarity and release of control is what we are praying for. God controls things. Not us.

All of the digestive stuff being less stable again, that's the biggest update around here. In some ways, we're just going about the day on the current feeding schedule, dealing with pukes, doing therapies, and lovin' on our little man. In other ways, big changes to our comfortable routines are on the horizon and that's unsettling.

In other news,

We said yes to a second night nurse! She will be with us two nights a week, I think. Two of the nights that D is not there right now. Prayers over Leo's safety and care. We both got to meet R and that's always a big plus. Brad has talked to her, too, not just me. But a stranger coming in while we're asleep is always a weird thing. So yeah, just prayers over that whole situation. We don't know when she will start yet, but probably in the next month.

The rehab medicine doctor was very pleased with the range of motion that Leo has in his joints. That was encouraging. I'm seeing a weird blessing in Leo's body. From my understanding, CP often can tighten muscles so that has they grow, the muscles contract and lose range of motion. His limbs could become less and less functional. Well, with Leo's movement disorder, his brain is sending constant messages to his body to move. This means he is constantly extending and stretching his limbs. And while the movement disorder provides a very difficult and unique set of difficulties, there's a part of us that has seen a little blessing in the fact that his movements are helping protect his mobility.

Leo continues to rock and roll in therapy. As we work through all of this digestive stuff, we've been able to understand Leo's body better as a whole. We are continuing to learn what Leo can control and what he can't. I'm getting more confident at recognizing pain vs. discontentment. As we learn more about his body, we learn more about him as a person. That's the cool part of all of this.

He's been doing significantly better in his equipments as well. My mom is going to help me take the stroller with us the next time we go to CHOP. That will be new and stressful but also a good experience. The stroller still doesn't feel functional at all, but it's getting better. And I'm grateful for my mom helping me handle it mentally by simply working on it with Leo and me.

I think that's it, but at the same time I feel like there was more I was going to say. Thank you for your prayers. Please know that I am working on not centering my life on Leo's weight check in October. So I will do my best to share an update but also don't want to be so focused on it that there's nothing else going on. Thank you for showing us what community looks like. I pray others have found community through our little lion man, as well.

Our friend Cass captured this treasure.