Leo, Our Little Lion Man

   My new blog!      The blog we started on the night Leo was born had a very specific purpose. We could update our community on what our journey looked like. We could tell our community what was going on in our lives as we experienced one of the most difficult periods of our life. As Leo's days outside of the womb grew, we gave updates on each talk with a doctor, each appointment, each step of the journey. 4 years later, life looks very different. Things aren't changing as frequently. Routine does exist within medically complicated parenting. More than that, though, progress looks very different.       I have an interesting relationship with that word: "progress". Here's the thing, we often define "progress" in terms of physical capabilities. Toward the beginning of Leo's life, we were asking questions about Leo's weight gain, eating journey, physical development, and such. Through many of these questions, we could see "progress". We s...

     Ok, honest take here, I don't like it when the answer to "How's life?" is "Busy!" I get so  tired of that. So I'm consciously changing that answer here. Um, ok, I'm stealing from my sister-in-law. Life is FULL. Summer has been FULL of so much learning and such rich experiences.     I am currently sitting in the Mexico City airport...by myself. I am away for a week with some friends in Mexico (missionary kid friends) while Brad and Leo hold the fort down. We also have help in that because some people are watching Leo during my time away so that Brad can get some kid-free time to focus on work. Other than those times, he's balancing parenting and working without me.      This trip is a completely new experience for our family. All of us are processing in our own ways. Brad and I don't like to be away from each other. Especially with travelling by myself, there's been anxiety on both sides. Leo and I have never been apart for this long....

      About a week ago we had another hospital stay for a 24hr EEG again. Leo had a movement happen one morning that was a new one. It was kind of like tremors or shaking. I took a video and sent it to neurology. I also mentally took in all the observations that I could that I thought were important. Neurology was concerned with the video and felt like we needed to go get an EEG because there could be a chance of the movement happening in the near future again. And we want to get it on EEG if we can.      Spoiler alert, we didn't catch that movement on the EEG. However, Leo had another 24hrs of EEG which showed no seizures. I was also encouraged that the abnormalities that it showed again were being described in the same way as last time. Meaning, this is Leo's baseline, Leo's normal. That's not to say that something can't develop. But I'm encouraged that it seems like his brain is functioning in the same way that it always has.      With the...

      A bit of a journal entry from our 24 hour stay at the hospital to get a longer EEG to see if Leo is having seizures as irregular behavior had been noted as well as some irregularities on a shorter EEG.     I could not figure out how to get these in the order that I wanted. So, I apologize, this is not in chronological order. Just take these as snapshots with my thoughts from this visit.  I just wanted to show that when they were putting the EEG on his head there were three people around him. Mainly two of them were marking his head and placing the glue. He was genuinely enjoying the touches and the attention. He kept looking back and forth between them and making happy noises. It was such a blessing that he had a good attitude.  This is simply so we mamas can feel a little less alone. This picture was when we got checked into our hospital room. It was around 2pm. They had just started the EEG. I was painfully processing the reality of what a 24hr...

      Thank you so much for your prayers! This morning was not what we had been expecting. Neurology came in around 9am (EEG is planned to run until 2pm). They asked if I felt like he had done all of the questionable behaviors while attached to the EEG. We really felt like they had gotten the full picture. The behavior that the doctor saw which started this question was definitely present multiple times. There were some other movements that happened that I thought, "I'm glad that happened while he was hooked up. Now they can tell us if that's a seizure or not."      After confirming that she said, "Well, the EEG shows that none of that is seizures." I teared up immediately and said, "I'm sorry. I've been anxious about this. That's great! Keep going. I'm fine. I promise." So he is high risk for developing seizures--which is not new information to us--but he is not having seizures.     Once again, I want to write more. I have so many ...

      I am working on another post with some pictures and more like a journal of our time here. But right now I need to try and get some sleep. But I would like to update anyone looking for an update!     We are around 10 hours into the 24. This has gone so much better than expected. Leo was in mostly happy moods until right before falling asleep. It's not fun seeing him in the EEG head wrap. Feels like he's a really sick kid. And it's not fun pressing the red button when you see behavior that could be seizures. And then it's really not fun to think about neurology coming tomorrow and possibly telling us about all of the seizures that he's having. The EEG is kinda just in your face and ugh. But Brad was here the whole day. And we've had really cool nurses.      Prayers appreciated for the night. Leo is asleep and then almost waking up with some pushing and fussing. I think he's getting frustrated with the head garb. All the wires plus his night ti...

      Well, the past two weeks have carried a bit of drama for us. I meant to write out more of my thoughts in the moment, but the moment passed me. So, a bit of a long story short: Leo's pcp wondered if she was seeing seizures.     That lead to doing a 30min EEG. The results of that EEG showed some "abnormalities". Neurologist from CHOP would like a 24hr EEG to give us a better picture of what's going on in his brain. It seems to me that seizures are not as black and white as I thought they were. There has been talk of "will this weird brain activity turn into seizures?" There's just a lot of looking and assessing. No one has said that the 30min EEG caught "seizures". Also, his neurologist said that she would not feel comfortable prescribing seizure meds without doing a 24hr EEG.      So tomorrow morning we are headed to the ED as that is the quickest way to get admitted for a 24hr EEG. Today was a bit hectic in trying to assess with his neuro...

      Hello, beautiful people! I'm coming on here with the intent of being quick because I am headed to bed and sleep is important :) We have an EEG scheduled for Leo this Wednesday. Would you cover that EEG in prayer as well as tomorrow leading up to it, specifically for me and anxiety anticipating the EEG? So, an EEG is to look for seizure activity. This isn't as dramatic as it sounds at the moment but seizures for Leo are a huge fear of mine. His PCP has twice now wondered if she witnessed him having a seizure. It was essentially him being very still. I have so many reasons in my head why I don't think it was. And, honestly, I think there's validity to a lot of them. However, she's doing her job in looking into any time where the question came up, "was that a seizure?" With Leo's history, you have to take those seriously. She is definitely of the mind that it could be nothing, but also thought it would be good to check it out.  The other thing about...

      So recently, this fear has been creeping up on me. I believe that it's part of grief. Grief is an old friend of mine. She really is. As a mother, grief isn't with me all the time anymore. But we still talk occasionally. When Leo's birthday came up this year, Grief didn't really visit me beforehand. I didn't cry every day leading up to it. I wasn't overcome with all of the wishes I had for my kid that can't be realized. I wasn't painfully aware of the timeline on the day of. This year Grief dropped in on Leo's birthday, but didn't stay for the party.      On March 7th, the anniversary of the day that I went into labor, Grief came and sat with me. We talked about what labor looked like and felt like. We talked about how I did in labor. We talked about the amazing things that my body did to birth a child. It was nice to have someone understand that on the day Leo was born, I felt like I hadn't done enough. Because Leo needed more help afte...

 Man, coming back on here after months is really not an easy thing. There's so much to say and at the same time nothing to say because nothing is happening at the moment.  So here's the gist of where our family is at after the winter:     We had wonderful holidays. Leo loves ripping paper and expressions from people so opening presents (not even his) is just a wonderful time. He continues to learn new things and grow in body control and expression. We are excited as we learn to communicate with him more and do our best to teach him to communicate. It is very much a team effort and we are so grateful that we can communicate with him more and get his preferences.      After the holidays we had some 5 or 6 weeks of sickness in our house. I think it's been a bad sick season all over. But we were very much feeling it. Thankfully, nothing was too terrible. We're also grateful that we never had 3 of us sick at once so usually there was a parent who has not fe...

      We have two pieces of equipment, but several things that serve as adaptive gear for Leo. I'm still learning the definitions. Or why is it important to make a distinction, haha? This is an update on the adaptive things that Leo has been having a harder time with that we hope to incorporate more into daily life in the future.      Stander: pretty self-explanatory. We've had it for almost two years, I think. When we first got it, I was under the impression that I'd be putting Leo in it for meals regularly so that he could be held up while he ate without me having to do it every time. Well, not quite how it worked.      Leo's body's natural way of moving is into an extension. His head turns to the right and he almost tries to push it further (to looking behind him). His one arm extends, the other bends. His hips thrust forward and his legs go straight, like with crazy strength. And his feet point and turn in. This is a little weird to descr...

      Leo has a buddy. Leo and Isaiah are different in a lot of ways, but also very similar in special ways. They get things that not many other people get about them. From a mama's perspective, a practical way to explain it is this: Leo and Isaiah are about 6 months apart, non verbal, not mobile, and g tube fed. They get each other. And they are so fun to see hang out.      Isaiah's mommy and I were having a coffee date with our boys. During our time, I had a sweet realization of something that I am coming to understand more and more in this stage of life. God is continuing to teach me a lot about Leo's therapy, Leo's body, and engaging with others.      I used to freak out every time Leo missed a therapy session. It felt like a big no-no. Brad and I didn't want to be not prioritizing therapy. Making a call between therapy or another activity was hard. It was just hard to prioritize. And I think it felt like any time prioritizing something o...

    Recently, we've been getting this question more. And I want to be honest, I don't quite know how to answer that question. I believe it is asked with sincere desire to see the difficulties we/he have, and to seek to understand something that is not experienced by the person asking. But it's a little weird to answer and I want to try and explain why...     When Leo was younger, this felt a bit more applicable. We had specific questions that we were trying to answer and there were still some typical milestones being met. I think that's the biggest thing. We had specific questions that we were trying to answer. Leo was failure to thrive. We couldn't travel without him drenching himself in sweat in the car seat. The stroller was a similar story. We were seeing new specialists or finding another doctor. We were starting a new therapy, practicing a familiar one. Etc. Etc.      And in our current stage, I don't feel like we have as many or as pressing spec...

 If you would like to receive notifications--I think it's emails--when I post on here, you can find the "follow" button on the left hand side of the page on the blog! It's under the menu options.  This is to help if you were wanting to continue to follow even though the blog posts won't be on facebook anymore.  Please let me know if you have any issues with this. This is pretty fun, making my blog "subscribable". But new to me, so, yeah, let me know if you have any issues. 

    I don't know why I'm having a hard time starting this post. So, see I've been floundering with writing another update because I have this internal conflict. One side says, "I need to talk about Leo, how he's doing, and nothing else." The other side says, "There's not much to update on so do you need to keep writing?" And, yet, another side says, "Your friends read this to hear about Leo, not your thoughts."     But, in reality, this blog has changed its shape. It started the night Leo was born. It was a way to tell our community what was up for Brad, Leo, and me as the world as we knew it had shattered. It was way easier to write one post than send a thousand texts (and that's zero complaint about having community and people to text). It was literally the medical updates that doctors would give. And throughout Leo's life, those have gone from multiple updates in a day, to multiple appointments in a week, to months and months...

God gave me a sweet gift in parenting today. I think that lots of parents have experienced something like this in their own way. I also think that Leo being not neurotypical means I experienced this in a different way. I want to share this because I hope that other people--parents specifically--can relate and not feel alone. I also share this because I want to express a way that Leo's therapies can affect how I view things. So, I want to relate to people by feeling like this is a normal parenting thing, and I also want people to see how my parenting journey is different... (just to be clear, that doesn't mean that I have to get both of those things. just recognizing in myself that i am desiring both of those things) I've been anxious today for a variety of reasons. And--time for a personal moment here--recently God and I have been talking through my screentime habits and how I use watching a screen (tv shows or social media) to escape my anxious feelings. Screentime is how ...

 Pictures that--I think--do not seem like significant things, but mean something significant to me.  A book in Spanish, a coffee shop, and Leo's stroller and food. It's a defiance of expectations: expectations from my past self and a perceived social norm. My past self thought that speaking to him in Spanish or being out and about with a g tube were not possible. When we learned the extent of his brain damage, I questioned the reality of teaching him Spanish. And, while I wish I spoke it to him much more than I do, it's a sweet opportunity to communicate to him, myself, and others that he is capable of learning even if initially his level of comprehension is questioned. And it reminds me of the greater picture, too. One of the best parts of being Leo's mom is that I get to expect things from him every day. Being immobile and nonverbal his communication or lack thereof can be perceived as a baby's level of comprehension. The truth is his comprehension is there. And I...

 What a month! We're all saying all the things, right? "Can you believe it's JULY already?!" "The summer is flying by!" "We've got a lot going on!" "Wasn't it just January?" In light of the fullness of life, I'd like to invite you to take a moment and breathe deep with me. I mean this in all seriousness. If you relate to any  of the above, take a breath. What has 2024 been like for you? What richness have you experienced? How do you know God better? What has fallen apart? How are you different? What  is your life full of ? In the midst of bustle, don't forget the beauty in life, the needs you have that are beyond met, and the presence of Jesus. Now. June for our household :) We had an exciting June. The first full week of June, Brad and I got away for 3 nights. We are, again, reminded of the beauty of community. And we are so deeply grateful for our community around us. We do and have done nothing to deserve it. So, our fr...