Leo, Our Little Lion Man

 Hiya' Friends! These are some things regarding Leo's care, appointments, therapies, development, etc. that are rolling around in our heads these days. Eating, Pukes, Weight We haven't seen nutrition or GI in a little bit. We've monitored his weight in our own way or through some of the appointments we have had. It's not at a totally great place, but I'm not too concerned. He is mostly going up, but has some up and downs just not drastic. Brad and I are confident in feeding Leo some food that we blend up ourselves (instead of the packaged) in order to expand our options of what we can feed him. We are not replacing meals with what we have blended, but just introducing new ingredients into his system in a more significant portion (60mls of blended food). This is a bit of a time-consuming process and so far we have run into one ingredient that did not seem to sit well in his system. He did not seem to adjust to it even with some time. We have seen that feeding him...

I've taken some pictures of seemingly insignificant moments or things with the hope of putting into words what I see in these pictures. A snapshot in the bathroom at the end of therapy That woman, that mom in the picture, she's happy. And you see her mug? "You are not alone." She's telling other moms that are experiencing similar things that they are not alone. She wants to give them hope. And that means that she has hope herself. She used to be very distraught at therapy. She used to feel like therapy was a reminder of everything that she wasn't doing, all the ways she had failed her son. But she's learning to embrace her limits, practice gratitude, and she's at peace with her son's struggles. She is understanding more every day that therapy isn't to fix him, it's to help. And from that  place, she can focus on what God wants for the day and the therapy session, not the overwhelming need to fix what he's got going on.  Coffee, CHOP flo...

    This is a bit of a weird post, but I'd really like to talk about 1) some things God has taught me about help 2) receiving help 3) and asking for help.      Help. Man. Needing a lot of help can be a very uncomfortable experience. May I just say that I feel as though I have been taking and taking from the community around us for the last 3 years without giving anything in return. That feels really raw and cringey. I don't want people to think I'm lazy. I don't want to think I'm entitled to help and not push myself to do difficult things. I am so grateful for the help that we've received from people that I'd like to give back as a way to show appreciation. BUT,     the thing about help is that--in it's purest form--it's not given with expectations. We don't help people in order to get something from them. We don't help so that we can hold something over them and they now owe us a favor. Help is making it  easier for someone. We're all hu...

     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 ...

 I never know how to put this into words, but I'm going to try. Leo’s been understanding. And it feels weird to say for two reasons. 1) Being excited that Leo is understanding feels like I didn’t expect him to understand. And that feels like being a bad mom. 2) What if he can’t understand and I’m fooling myself? What about what other people think? What if they can’t tell what he’s communicating and think I’m crazy?  Now let me just say that I know that both of those reasons are untrue. But I think they’re worth mentioning.   Anyways, so comprehending. Where do I start? First off, I must say that we have the best therapists. I’m so grateful for how they work with and relate to Leo. They continually see his intelligence in a really beautiful way. So he does physical, occupational, speech, and vision therapy. And the basic way to say it is that we are using verbal instructions with him and he is showing that he understands. For example: 1) asking him to touch a specifi...

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 s...

I was writing another post and then we had a fairly eventful weekend! So, a post about other areas of our life is coming soon, but—in regards to this weekend: We had to take Leo to the ER on Saturday. He wasn’t breathing well, wheezing and coughing. I don’t mean to make this sound too dramatic. But yeah. He had a rough night Friday, a lot of mucus and very restless, but we hadn’t heard much coughing or stuff in his throat. However, he does this gasping/gulping thing when his reflux and congestion combine (my words, not a doctors 😉). So he was doing that but I was able to get it under control. Got him sleeping comfortably on me. But when he woke up from his morning nap, he was wheezing. And it was getting worse not better. He sounded like a squeaker toy. Made a couple of calls and drove to the ER. He wasn’t turning colors from lack of oxygen, but it was NOT a good car ride.  He got a steroid treatment there. We waited for a couple of hours to see if things got worse again. Then we ...